2 WEEKS POST OP

Well, for those of you that think I can't stay still or NOT do anything, I am here today to tell you that yes, at first I overdid it, but I have learned my lesson and it is NOT worth it so I can honestly tell you that for one week I left my house 2 times!!! Twice! Both for Dr. appointments. I had to go in b/c I got a bladder and kidney infection and started spiking a temperature. Over all, I have to say that I am doing pretty good. I sleep and sleep, I have NEVER watched so much tv in my entire life and not Mickey mouse clubhouse either! Shows that mom actually has never seen before, home makeover shows, TLC.

The kids have been fantastic. I didn't go to my parents like planned and came straight home after surgery and I am so glad. Steve has been wonderful, taking care of me, tucking me in, getting me tea, adjusting my pillows, making sure I take my pills, and yes, even giving me my shots in my butt. True love :) I love being with my family even though I can't run around, play, and do all the things I would love to, I can see them, talk to them and that makes my spirits better. I go around the house pointing to things, they pick them up and put them where they are supposed to go, Karlie puts my socks on, underwear, they stand on a chair when mom needs a hug and kiss, Karlie tucks me in on the couch, helps lift me up, puts band aids on me, and even gets me water. One night we were eating at the table and I didn't feel good or like eating and Luke looks at me "MOM, you HAVE to eat your food!" I state I am not hungry (like he always does), and he says "But it will make your stomach feel better mom!!!" Sooo cute. They have all been wonderful. Steve has been staying home from work to take care of me, and I cannot tell you how much stronger we have become through this whole experience from day one, he has been at my side, really has shown me that he really does love me.

EVEN our dog Remi. She sleeps on the couch with me every single night, and every time I go to the bathroom in the night, she walks me there, lays down on a towel at my feet and when I am done, walks me back to the couch and we go back to sleep. EVERY TIME!!! She has never really been a momma's girl, but I swear she knows and its like she is taking care of me too!

A couple set backs, kidney, bladder infection, cold sores, night sweats, and I was putting my socks on and heard a pop. I snapped some of my sutures in the layers underneath and now have a bulge coming into my incision. Went to Dr. to have checked, he said its ok right now as long as I don't pop too many b/c then my intestines will come into that hole and cause more problems.
They also pumped me so full of stool softeners and laxatives b/c its been over 10 days since I had gone. Pain meds make it worse, NOT good. But don't worry, my prayers got answered! :)
My first day home alone, I took Remi out to go pee, looked down and she was gone! She NEVER does this. Screaming for her, whistling, looking all over and by this point crying b/c I am in pain yelling for the dumb dog. Called Steve crying b/c Remi ran away and I can't find her, can't walk to go find her, so he said he will come home. 5 min. later some grandpa called and asked if I was looking for a little dog named Remi. He found her on the side of the road down a ways and he would bring her home. He pulls in and there I stand crying, I was so mad, trying to do this alone on my own!!!
Then Saturday woke to a nightmare of someone ripping my stomach apart and crawling down the side of the road in soooo much pain (dream) then really wake up, look down and there is blood all over my shirt. I must have scratched myself and ripped open my incision, it STILL won't stop leaking blood, trying to get ahold of Dr. to find out what to do. It was terrible, scary.

So after today I enter week 3. I am weaning off drugs so thats a good sign. Down to less than 1/2 of what I was when I left. Still in pain but it has to end someday!!! All I keep thinking about is that I should be dead, What is the Lord calling me to do and why did He give me another chance. I should have been the one crossing that 5k finish line and falling over dead at 30 years old....But I wasn't. I owe my life, all that I have, to the Lord. Times of crisis has turned me onto a new path, one directed by Him. I know that He will use me, yes, maybe even to write a book someday, I want to tell others about His amazing grace and love, if we would just open up our eyes to HIS truth, not the worldly values....We all have a piece missing in our lives, a void, one created BY HIM, that only He can fill and I am sooo glad that I have found my missing "peace".

SURGERY AT HENRY FORD-DETROIT

Well, I have made it. I am alive, I am home and for the most part, doing pretty good. I thought about the past week and thought I would relive it and journal it b/c for me, writing is therapy. I have no memory as most of my friends can confirm, so in 30 years I can look back to this point in my life and praise the Lord for where He has been in my life and thank Him for bringing me through it all. I tell you, there is NO WAY I could have ever survived this far without Him and after looking directly at my insides, my surgeon doesn't know how I ever survived this long. He said that anyone in my condition would have normally died a long time ago, it has been going on even longer than we thought, not since birth but longer than Lukes birth for sure, he would give it at least 5+ years that this thing has been "brewing" inside of me, just waiting to surface and waiting to kill me at any time, why it didn't....The surgeon just shrugs and looks mind blown and he said he couldn't believe his eyes he has never seen anything like it, I looked him right in the eye and said I am alive b/c of the good Lord, prayers, and that is all I Know. My friends, family, and so many people we don't even know have been praying for you Dr. Aboujould and we praise God for your hands that have helped me thus far!

Its Monday morning April 11. Surgery day. I couldn't eat after 10am Sunday morning so I am hungry. I HATE not eating and I thought the drive all the way to Detroit with no coffee would kill me. For the most part I was very at peace. I have a few break downs of emotional stress but overall I was facing it strong, I couldn't think any other way. Arrived just on time to surgical family waiting room and were quickly escorted to our surgery prep room. IV #1 started and fluids, IV #2 started just "incase" and then a 3rd arterial line (something I have never had before was started and sutured into my wrist so it wouldn't go anywhere) they use it for monitoring my blood pressure and blood loss. Cried with Steve, prayed, and after my nurse gave me a special "mojito cocktail" as he called it, I was gone.

I remember waking up to intense pain, crying, and begging someone to help me. I have no idea where I was but they kept telling me to relax it was all done. Why aren't they knocking me out then? The pain was so bad, all I remember saying is "help" I couldn't hardly say it b/c I lost my voice b/c of my breathing tube placed for surgery. After that, most is a blur. I was in ICU for 2 days for close monitoring. Surgery actually took 4 hours.

I transferred and ended with a joint room. *ALWAYS ask for a private room if you are going to have a long surgery and be there a long time I learned this a long time ago after my colon surgery and someone passed on the advice to me. I did ask my surgeon prior to surgery day so after 1/2 a day they realized they made a mistake and someone was discharged and i got my own room. Thank goodness b/c I was there for 5 more days.

I have NEVER had such a bad experience with nurses in all my life. They must really hate their job and it was so hard. No one was pleasant, helpful, kind, loving except for ONE and I thank the Lord that I had my husband at my side the whole time b/c most of those patients on that floor never have anyone and if the nurse is the only one they ever see, it has got to be even more depressing than it already is. It was obvious they were there for a job, they treated you like a number and it was very sad for me to see. They were rude, and even mocked another patient while I was walking by. "Suzie, if you keep complaining, I'm gonna start calling you samantha" another nurse said, and they all started laughing. Samantha was the patient in the room next to me and was discharged the day before. Call buttons, Monitors would go beeping for 10 min at a time no biggy!! Drug schedules were missed, orders were forgotten, I even threw up on myself and sat in it for 5 minutes with my call button pushed before anyone came.

I had rides to and from radiology that were like a nightmare. The driver must have thought they were in a race and would go soooo fast down hills, bumps, banging doors and when you just had your stomach cut open that is the LAST thing you want. I even cried on several occasions, begging them to slow down. I had my pain meds monitored so that hopefully I could make it thru the test before needing my next dose, one time I layed in a dark hall for 45 min. alone waiting for someone to take me back to my room. Transporters would walk by, even sit down in the chairs next to me watching me crying and said they couldn't take me b/c I wasn't their patient. I had 3 rides like that! I cried every single time! Everyone took well over triple the time they said it would take. Moving was bad, and when you are in pain, you just want to be in your room, not pushed around, pulled on, stand, walk, take in deep breathes...I can't!

I kept telling steve that I couldn't see the light, things weren't getting better....When was I going to feel a little better? By day 6 I finally could see it. Figured out what drugs I couldn't take, which ones made me even sicker, which ones finally worked for pain and things were beginning to look up. Day 7 I got my discharge papers, instructions, loaded up with my pain meds and was ready to go home. I felt ready. I wasn't scared anymore to go home, I KNEW that God would help get me there.

Hows it look? My Dr said that things were MUCH worse in there than he thought and my veins (which should be thin and soft) were tough and thick, coarse which to him, told him that my pressures have been high for a VERY long time, this has been going on even longer than we thought. He made a 7-8 inch cut that makes the shape of a "J" starting just below my sternum to my left lower side, an angle. He has to push all my intestines out of the way so I will be sore for a long time b/c the second you touch your intestines, they go into a temporary coma sleep. He placed the synthetic shunt (8mm) which has a higher rate of clotting and goes from 95% success rate to 85% compared to an 10mm. 10 couldn't be used b/c it would release tooooo much pressure and we don't want that b/c then the blood flow would reverse in the wrong direction and we could lose my liver. My internal pressures were 27. 14-16 considered dangerous, 16+ will bleed again and again. I was a ticking time bomb and no doubt would have bled again. He released that pressure from 27 to 11. He said it was working perfectly, text book, my veins in my throat were cut off so they will hopefully never be able to come back again, all the extra vessels created have already started to disappear! He also said that while he was in there, something happened that he has NEVER seen. My spleen is enormous and the same size as my liver, and when they are that big at the beginning he tapped it and it was hard, firm, tough like a rock. AS SOON as he placed that shunt, he saw something move, he asked an assisting surgeon to check my spleen b/c he thought he saw it move. (it can take MONTHS if not years for a spleen to go back to its original size after you have released its pressure) The assistant surgeon tapped it and it was soft, mooshy, and pliable, it deflated like a balloon and my left kidney which once was forced down into my pelvis b/c of it size, they had to find it a new "home" higher up in my abdomen. Dr Aboujould said it was amazing. He just stood and held his hand to his face shaking his head, I honestly do NOT know how you managed to stay alive this long....I told him its b/c I have the great Lord above and I had millions saying prayers on my behalf for that day and for my awesome surgeon and his hands to do a great job and I told him that I KNEW he would.

Learned I will never be able to go off my blood thinners, which was a bit discouraging...lifelong pokes...oh well. I can't complain b/c I am ALIVE!!!! How can I ever complain???? Really each of us could be dead at any moment I don't care what the age! The LORD has been my rock, my ground, and all of you have been my wings, helping to carry me through this. To all I say "THANK YOU, I LOVE YOU, PRAISE THE ALMIGHTY LORD!!!!" Thank you for all your prayers lifted when I didn't have the strength to go on and couldn't do it alone. I have suffered, but I always think to myself, I cannot believe how much pain I caused the LORD to go thru. If he went thru this much, I feel so bad, so thankful, so speechless and sooooooo blessed. By His Grace I am saved, He did the ultimate sacrifice and what a way to celebrate this Easter!!! It just took on a WHOLE new perspective and meaning for me b/c I firmly believe God knows, God is there with us, He feels our pain and sadness, he knows our struggles, afflictions b/c HE too has been there!!! He gave me time only by grace, but my time will end and I can't wait to thank Him and praise Him forever.

Hi all, Steve here.....learning how to face book and blog! i don't know what is more stressfull, facebook or blog! ;-) or caring for Lisa in this procedure. It has been a long few days. ups and downs. I believe Murphy is our best freind as always. (that being murphy's law) Lisa has had a good Wenesday and things looked good. Walking the hallways, eating her meals, having bowol movements.....etc.... Thursday was a step back. We started the day with a lot of pain, hic-ups causing pain to the stomach and turning into back up of the intestines. Lisa's stomach swelled inches in a matter of hours and the pain increased dramatically. She started dry heaving and vomitting all afternoon causing much more pain. It was the worst thing I had to watch in a long time. All she kept asking for is prayers...."please facebook everyone for prayers" that is when I showed her the emails of over 100 of you that have responded today with prayers are coming!!! thank you all soooo much. I have been on the giving end of prayers and wondered if this makes a difference....... being on the receiving end let me tell you___it DOES! Please keep it up!! Thank you sooo much!!! Back to facts----Lisa is having common problems with this type of surgery. Collapse of the lungs--due to laying down for surgery and after surery. Intestine problems--- doc's pushed alot of stuff around while they were in there.....and yeah, organs don't like being touched! It will take time to work through these problems and strength to over come them. we are hopefull that Lisa can keep positive and focused to get through this. She is mentally, physically at her ends and just wants this to be done...... now..... but we have to ride this boat to the dock.... I keep telling her there is no jumping off now!!!! It is hard work both for patient and me... I can not stand to watch suffering, but I know it is part of the recovery package. The main blessing is in the big picture.....her shunt is working perfectly and diverting the high pressure from the one system but also flowing through the liver!!! Praise the Lord. This is what we have asked for!.... I know we have a long road ahead of us, and again I (Steve) want to thank all of you, friends and family for all the support you have given!! I have never in my life felt so much love and support than now. Thank you, thank you, thank you!!!!!!!!!!!! I had hoped that we would be back home this weekend, but I think todays setbacks may add a day or two to our stay in detroit. I will keep doing my best on updates please call, email or text if I have left any one out....... Again, thank you all soooo much! Praise be to God, and his will be done!!!!!!!!!!!!!!!!!!

Yes this is very complicated but it helps describe what is going to be done by showing you a picture. My synthetic shunt which will vary between 8mm-10mm in size depending on how much pressure needs to be alleviated. It will be placed between my splenic vein and kidney vein. I have 2 large clots that will always remain, one in my right portal vein (liver) and one in my superior messenteric vein (which feeds your intestines). These will not be removed b/c they have been in there so long they are now like rocks and have hardened. We are hoping to relieve the pressure behind my liver so that those "varicose veins" will no longer be created and I will not bleed again. He will also cut my coronary vein which is just behind my liver, this is where all that pressure goes up and creates those veins in my esophagus and stomach, therefor hopefully they will NEVER return. I have MANY new veins inside my body that have been created as the bodies way of defense to keep me alive, to get around the clots that have formed....These new veins are great b/c they kept me alive, but they can't handle all the pressure and eventually they bleed. This is going to be an OPEN vascular reconstruction surgery 5+ hours in length. He doesn't know if it going to be possible for sure until he "gets in there". I am afraid that he will cut me open and find out that it is worse in there than we thought and not be able to do it. This is what happened to me in 09 at U of M when I was a patient awaiting my shunt in my liver...It never happened and I am thankful to the Lord for that, but when you go in, thinking that this is going to be it, this is going to be the "fix", it is devastating to me emotionally b/c the struggle continues..... The Lord is my great physician and I pray that this time, it is it. This is the answer, this is the "fix" we are hoping it will be.

3 DAY COUNTDOWN.....GETTING SCARED

I have been meaning to get on here for a long time....Kids sick, sister is in town, watching my nephews, time just goes....I don't know where sometimes but its amazing how quickly a week can pass and you have nothing accomplished to show for it. I have been LAZY!!! Just wanting to stay home, I want to stay in my pjs, watch movies, snuggle with the kids, do nothing! That is really strange to me b/c that is SOOO not me. I keep thinking to myself that I am doing great, then all of a sudden out of nowhere I start freaking out. Maybe its because the day is coming soon. Pre-op went well. It was a long 10 hour day, 3 hours in the car there and then 3 back with a 4 hour appointment. I got my chest xray, EKG, blood, met the anesthesiologist, and surgeon again. I have a nice drawing he made but can't seem to get it to download on here so I will try again some other time, b/c it definitely helps in explaining exactly what it is that I am going to have done. Synthetic "artificial" shunt placed between my splenic vein (a high pressure system) and tying into the kidney vein (a low pressure system) to balance out the pressures and release all that high pressure in my liver area creating all those veins and causing my bleeding. 5 hour surgery, cutting me open from top to bottom on my belly, with venous vascular reconstruction, leaving me 5-7 days in the hospital. I am afraid of the pain. I am crying already right now just thinking about being away from my kids....I know I have done it before for vacation but this is different. I hate being away, I worry whats happening to them even if I know they are in good hands. Motherly instinct and worry, the nurturing part of me that tells me that I want to do it, I want to be with them, when I know that I can't. I know I had surgery before but this one seems more scary to me. Probably b/c my colon surgery was when I was 20 and nieve, now I am in the medical field and know too much, and been through SOOOO much that I just don't want to do something else. I want to be done. Now. I don't want to have to do this to "fix" me. What if it doesn't.....Thats the good ol devil working on my negative side, fearing that its all going to be a waste and THEN what are we going to do!!!!!???? It took us this long to come to this conclusion with 3 different surgeons disagreeing, if this doesn't work I don't know whats going to happen to me. Then I look to the positive again, and thank the good ol Lord that I don't have cancer, that I am alive today after all that I have gone thru I could be dead by now. If I have a day where I am feeling sorry for myself, all I have to do is go to work for a day and see people that ARE dying, my newest friend just 24 with maybe months to live....Why? It breaks my heart to scan patients that don't even have a clue whats happening inside their own bodies, to see the poison killing them. They would trade places with me in a heartbeat! So I have to stay positive, I have to stay strong....This IS going to fix me, this IS going to be the end of it! I WILL get off my bloodthinners someday, I WILL NOT have another bleed again, I WILL NOT have to get my veins in my throat "wrapped" again and that my friends is sooooo much to be thankful for! I have been ignoring a bill on my counter for weeks ($1500) then this week my friends at work gave me a surprise "brunch" they all gave money to help me and it came to EXACTLY the same amount as my bill from my hospitalization when I had my bleed. CAN YOU SAY TO GOD BE THE GLORY!!!! I couldn't stop crying b/c I was overwhelmed by the love and support that they were showering on me...I was shaking and I was sooo surprised, had NO CLUE what was going on. What a great God we serve and How awesome to be a giver. I am not used to this "receiving" stuff, and I will be honest it makes me feel weird, but at the same time rejoice in the Lord, to see His hand at work, to see how many people really DO care and to know that I too can do the same thing for someone else when I am thru all of this! How much better will it be to give than receive!!!! Its all so exciting. I can't even begin to explain how many ways the Lord has revelled his hand, brings tears to my eyes. I am so undeserving, such a nothing, I have been humbled soo many times b/c so many love me and I am BLESSED beyond words. It has taught me sooo much. I know how it feels to be on this side of receiving and in the valley, and I will work harder when I am on the "good" side someday! "Earthly discomfort is a glad swap for heavenly peace"....God wanted to get my attention and trust me, He got it. What is it going to take to get yours? Is He whispering to you? Shouting? I keep telling myself when I am sad and wonder why....Though I hear nothing, He is speaking. Though I see nothing when I WANT, he is acting. With God there are no accidents and every incident is intended to bring us closer to each other and to HIM. Each day is a gift from Him and I am going to try my best to choose to use that day to glorify Him in all that I do. I know I will fail. I know I am weak and have plenty of faults, but each day I am going to wake up and start anew, try better, try harder to be better, not for me, for Him. That is all that matters.

FARM HOUSE

BE STILL AND KNOW THAT I AM GOD

That verse (psalm 46:10) has been popping up and in my face everywhere I turn. I am NOT kidding!!! I cannot even begin to tell you how many times and the places that I have been reading it. Its like every paper I open, every sign I see in the store, every picture I look at, has it on it! The Lord must be telling me to do just that.....So I am. "Be Still and KNOW that I am GOD."...... Renting is an awesome thing. You don't have to do your lawn, you don't have to snow blow/plow, you don't have to buy stuff for the house b/c you really don't want to stick your money into anything short term so you save a ton of money, and if something breaks, someone else has to fix it! Its great! With only one bedroom (ya you read that right! Steve and I sleep in the porch! Its like a 4-season room so its really not as bad as it sounds :) with only 1 bathroom and a small living area, you can clean the place in NO time! Its great! You have all the time in the world to focus on your kids, read your bible, pray, visit friends, hang out with family, and really enjoy and focus on LIFE. Each day is a Gift. I really think that when I have to leave, its going to be harder on me b/c I just love this little place and it has been so special to me b/c I truly feel like its the greatest blessing...Our house sold, we have a cozy place to live, and I can recover after surgery in our comfy little farm house, the Lord KNEW just what Lisa needed and the Veltemas are the most wonderful people and I cannot thank them enough for all that they have done for us. Its been a great adventure and it has made me really appreciate country living and being "away" yet so close to it all. "Be Still and KNOW that I am GOD"......so when are we going to leave? I don't know and I really am in no hurry to do so. I don't care if we stay here for years! Honestly! Ya we have looked. We went through a few homes so far, some in hudsonville and we have seriously contemplated buying already but I just keep thinking about that little verse that the Lord is popping in my face and head and think that He MUST be telling me to wait. Do we want to live in hudsonville or Byron Center? I LOVE my church and that is the only thing that makes me hesitant to leave hudsonville. Karlie is in preschool so I am not afraid of starting a different school system b/c we just started. I LOVE Byron center b/c that is where I was born and raised, it has a special place in my heart. We can really go anywhere! Where does the Lord WANT us to be? Where is that home going to be? Will I KNOW it when I see it? All things that only the Lord knows right now and that is all that gives me comfort . "Be Still and KNOW that I am GOD"....not even 2 weeks away from laying in the hospital to have surgery. We leave this week Thursday to have all my pre-op testing done to make sure my heart can "handle" the surgery which includes: chest xray, bloodwork, MRI, EKG, and meeting with the surgeon and discussing all options and what exactly this is going to me for me come the day of surgery and the time after. What to expect. The closer it gets, the more I cling to that verse....Yes I am scared but at the same time I know that the Lord will be with me and I do believe that He has led us to this decision and that it is the best one for me to do at this time. Will it be "the fix"? Again only the Lord knows that right now and that is the only thing that gives me comfort. One day at a time.....I am afraid of the pain and I am afraid to see my husband or mom worry or cry, they can't stand to see me suffering and we all pray that suffering will end....I am going to miss my kids. I am not afraid to die b/c if I do, oh man, I am going to be singing praises to the almighty Lord and I will finally get to see His glory forever and ever! I will not be sad to say goodbye to this world in which we live today. Karlie and Luke: Mom has to take time to do this right now for MY life and MY health and I can't be the mom I want to be..... someday I know they will understand and I can tell them about the Lords faithfulness to us and show them how much he blessed us thru this time of struggle and trials. 12 days to go....I cling to the promise I have in the Lord "Be Still and KNOW that I am GOD!!"

LIFE ON THE FARM

It has been an insane year, the year of 2011 has been a life changing one. I look back and I cannot believe how much has happened, changed, places I have been, things done....

I found out that I was sick again, I was in the hospital at metro for 4 days, experienced my first internal bleed, traveled to U of M for a consult with liver surgeon #1, traveled to Cleveland Clinic in Ohio for a consult with liver surgeon #2, and traveled to Henry Ford Detroit for a consult with liver surgeon #3. I am still mind boggled that 3 Dr's all had different views and opinions! Along with 3 scopes to look at my varicose veins in my throat, meaning sedation, and along with it comes pain, no eating, and a few days out of commission. And then on top of that, within a month and a half, we sold our house, signed, closed, moved out and moved into a farm house. Oh my goodness, no wonder I feel like I have been living life in a whirlwind!! There are days that I don't know where I am going or what I am doing!

Finally things seem to be settling down, and I can sit back and feel peace. Our home is gone, and I leave it with no sad feelings. That makes me feel good. Its not that I didn't love our home, I really did and I pray that I find one that I love as much as it. It was just time....Time to move on, and find the home to raise our kids for the rest of their lives and one not on a busy road, one with sidewalks, and hopefully many new friends. I am still sitting here with boxes all around and clothes piled on the floor, not knowing where to go with most of it. If you know me, I do not like disorder. Ya, I have some OCD but I am getting better in my old age :) I will always like things organized and clean but I am learning to let stuff go too, you start to realize it really DOESN'T matter and whats clean one minute is dirty the next. I have too many other things that ARE important to focus on.

So far I have successfully locked myself out of this little farm house 3 times. Day one, leaving for work for the first time. Let our dog out, 6 am, locked out. Knock on the front window and THANKFULLY sleeping king actually woke up and let me in. Turn around and try to open the garage door, stuck shut. Try to go back in the house, left the only key on the table, locked out again. THANKFULLY it was STEVE that decided it would be brilliant to close a 75 year old garage door that probably has never moved in 75 years. The springs snapped and wires went flying scraping my whole length of my car and smashing my windshield which now has a crack going all the way across my view. (if it would have been me that did this to HIS truck, oh my, I would never hear the end of it!) I have fallen, banged and knotted every muscle in my body, moving and lifting things to get us "settled" Only proves to me that I am definitely getting old and I better only have to move one more time in my life, why do we have sooo much unnecessary stuff!!!!

Karlie and Luke think this place is awesome. I asked if they missed our house and they screamed NO!!!! Luke says "I like our farm house!" They love sharing a room and think we are on a great adventure. Karlie refuses to take a bath or shower b/c she says there is dirt in the water. I will admit, I am sure she over hears me, and I don't think I will ever be taking a bath here, even went back to mom and dads to take one at their house, it was wonderful! City water!! Do you ever outgrow your mom and dads house? I feel like I still live there sometimes and I am 34 years old!!! Don't worry, I am clean, I do take showers here :)The dishes...Actually I have learned that its not that bad living without a dishwasher. Steve and I have bonded quite often over the dishes and tonight we were washing and drying the dishes together jamming away to Styx on the Ipod player. He keeps telling me that he is going to turn me into his little country girl yet. :)

I like it here. I feel at home. Now all I have to do is wait. Wait for surgery which hopefully will be happening soon and I will find out in the next few days. Wait for the house to hit that market that will be our HOME. Am I anxious? No. I am content. I am learning to appreciate even more, living simple, and loving it. I could rent this place for the rest of my life, eventually I will have to get used to the water! :) Do not be anxious about anything but by prayer and petition and with thanksgiving present your requests to God. (phil.4:6) The Lord will always take care of us, I have no fear, no anxious desires. I just love the Lord my God with all my heart and I am not afraid to tell anyone about it! Lead me, help me Lord to be the woman, the wife, mom, daughter, sister, and friend that you have called me to be. Fill my heart with your truth, and show me how to glorify you in all that I do. Amen.

NEW EMAIL ADDRESS

So I was really mad this week when I discovered that my email account was closed without any warning. We moved and comcast isn't available where we moved too and when you cancel cable and internet, it takes away your email account as well. Did NOT know this and was NOT told this when I called to cancel. They said I was supposed to read it in the literature when I signed up 8 years ago! I was NOT happy. So all my contacts, favorite emails, doctor reports, you name it are GONE! If you have emailed me in the past week chances are that I did NOT get it. Resend or contact me at lisa.jongsma@yahoo.com Thanks! Sorry!

CONSULT #3 DETROIT HENRY FORD HOSPITAL

So, I am running out of energy tonight and I should be going to bed, but I thought I better give an update. I said goodbye to our home of 8 years yesterday and I really felt good about it and had amazing peace about the whole thing. I wasn't sad at all! I wonder why? I guess b/c I know its not the home I want to stay in, I long to be in the area safe for the kids and school and be closer to church too. It was a great home and I loved it but it was time to go. I am ready for that next step, the next phase of life, hopefully to land in the home to raise our kids for the rest of their lives while at home with us. Its a new hope, new beginning and I am ready.

So we are in our cute little farm house. Its working well, I don't know where to go with all of our stuff, but it will work. I can tell you a few things already, 1. I don't like the smell of well water! GROSS!! Luke took a bath on saturday and I told steve that I didn't know if I could make it here. :) The water barely came out and it took almost an hour to fill the tub. The shower was much better and I am trying to keep an open mind. 2. I miss my dishwasher.
Other than that, I love my new kitchen, TONS of cupboards, pantry, storage and it is so homey and comfy and I just love it here! I do think that I could handle staying awhile and steve is already anxious to fire up the dirtbikes and hit the land and make trails for Luke and himself. We are all adjusting well and the kids are in LOVE sharing a room and think we are on a great adventure! Karlie tells everyone that we live in a barn and luke wants to know why it isn't red. :)

Henry ford in Detroit. I arrived and lets just say, the place doesn't give a very good impression. It looks really old, run down, dirty, and there are tons of people standing everywhere. We arrived a little early to make sure we found it ok and it was an awesome experience. The nurse was so great. She helped put me at ease and told me that the Dr. was awesome and that HE could figure out what to do. She said that in the past 10 years she has never seen a case like mine. She told me that he was going to figure me out and he would know exactly what to do.
She was right. Dr. Abouljoud was awesome! We spent an hour and half talking, he showed us diagrams, explained the body, most of which I already knew but I appreciated the fact that he was talking right to STEVE and showing him and telling him, so that everyone understood. He drew us pictures and talked about the different surgery options and why he didn't agree with them. Like he said, its not a matter of CAN they be done? We all know that each surgery suggested can be done but SHOULD it be done? We can't look at my case and figure out why this happened, its very complicated case, but we CAN take care of what has happened and get an action plan. IF he had to guess, it was from pregnancy and my delivery of luke, separating and breaking my back. (I KNEW THAT KID SHOULD HAVE BEEN TAKEN C-SECTION!!!) He said "its like the chicken and the egg, what came first?" (THIS WAS MY LINE!!! IF YOU LOOK AT MY PREVIOUS BLOG, I THINK I SAID THE EXACT SAME THING!!!) I loved him right away. He gives speeches to other doctors around the country b/c most Dr's want to place patients in either an "A" or "B" category, but we cannot do that to patients and HE suggests that you look at the patient as an individual and do what is best for them in their situation, a unconventional approach at creating the surgery to the patients needs. He didn't say anything bad about the other institutions but by explaining WHY their approach wasn't the best for me, it TOTALLY made sense and it was like writing on the wall. He KNEW me better than any dr. I have ever gone too and usually we are the one teaching the dr what is wrong and this time he showed us what is wrong and what we need to do about it.

We don't remove the spleen b/c my body needs it and major vessels have now attached themselves to that spleen and depend on it for their blood supply, we cannot take it out b/c we might have taken away a very important piece in my situation, we don't know how important it might be in there and we have to leave it.

We don't want to put a shunt in my liver "TIPS" b/c for one, the way it is usually done can't be done b/c that vein has a clot in it. So they would have to do it a non traditional way and that vein has too much of an angle to it and more than likely will not stay open long. Plus we bypass a healthy liver and we don't need to do that. "Some Dr's love the acknowledgement of creating papers and publicizing documents and books and thats great" he says, "I want to save peoples lives by getting in them, and actually DOING the surgeries. I know what works. Do I have all the literature and documents to prove it, no. I could have published millions of papers, but that is not what I was called to do."

We leave all the body parts, organs, and vessels where they are and create an artificial bypass "shunt" between my splenic vein and kidney vein. Essentially close to what U of M had proposed but not removing my spleen and using its vein to create the bypass but putting a fake one in. This way, we are NOT using one of my own veins and then if this clots or doesn't stay open we are not any worse off than we are today. We have OPTIONS. We leave the door open to what God forbid my happen years down the road. We don't know how long it will last, it could last forever but if it doesn't we still have many other options, we haven't clotted off a real vein and now are left without that one too! He put one in a patient similar to me, not with all the clot burden, but she has had hers for over 5 years and is doing well. He left telling us to think about it, talk, call him if questions, and he said he would call my GI and thank him for the "easy" referral. (wink).

Steve and I loved him. It was the answer we had been looking for, something that made 100% sense and something I have complete confidence in. Yes its surgery, yes I have to do something he says and I agree with that, but it could fix the problem forever and if something does happen, I am not worse off, it just means we are back to where we are today....We would have to find something else. I am doing it. I am ready. Big incision, 4-7 days at Henry ford, 6-8 weeks recovery. Ultrasounds and CT's monthly, spread to yearly, and if we reach 5 years, we might be done!

I will call tomorrow. Cancel my surgery at Cleveland clinic and schedule the new one. I am ready. I KNOW the Lord is going to take great care of me. I KNOW he is here holding my hand right now and loving me, I know he wants to see this come to an end just as much as I do. I KNOW that my relationship with him is all that matters in life and in death and that my friends is amazing comfort and peace when you TRULY know and understand how amazing he is. This life has taught me that it is FULL of disappointments, sadness, trials, struggles, let downs, friends and family will all hurt you at times, there is no guarantee in life but ONE, HIM. I have Him and my relationship to him is all that matters!!

BUSY WEEK AHEAD, REMAIN STRONG

Today I had an emotional day. Again! I recieved an email from my liver surgeon at U of M finally writting me back in reguards to some of my questions I have been running around my head since my scope on thursday revealed that I have no veins at risk of bleeding as of that day....Is that the coarse of the disease, come and go? Steve and I notice a trend and when they are gone and are in the past is when I am on 2 injections of blood thinner and NO working out or running, is this related? Will I have to be on blood thinners forever, that too has deadly consequences when talking about 40+ years? What if I stay the way I am, 2 shots, no working out, no running, zippo. Will it stay calm? Was the bleed I had from the veins in my throat or simply from being on blood thinners? We never did find the source.

He said that he has been thinking about my "plumbing" problem and here is his thoughts:
1. The Spleen shunt should work. but certainly not a given. If it does, then we could potentially wean off of anticoagulation over the next several years and be all set. (sounds great huh?) Me too. but then I have Cleveland clinic telling me that it has a 20% success rate long term if you look at it in 20 years. (not great)
2. TIPS (the procedure cleveland clinic suggests) is not a good idea. 2 reasons. One is that we are assuming you have a hypercoaguable state (clot easy and have a clotting problem) and the TIPS will require anti coagulation forever as long as you have it. Two, is that is not likely a long term solution
3. Doing nothing...Well I THINK we seem to see some progression of clot, here and there, but this in not totally clear. I THINK if we continued your blood thinner and did not try to reduce the portal hypertension then we should watch you closely with scopes every few months and CT's and ultrasounds at least every 6 months. If the veins in your throat continue or you have a bleed again or you start to have veins in your stomach...that would be a clear sign that more is needed and we cannot simply do nothing.

Choice 3 is not crazy. I cannot guarantee you that the spleen shunt will work. We need 100% karma if we are going to do this. All or nothing.

My liver surgeon at Cleveland said this:
You are correct in thinking there is no absolutely right answer in what to do. Medicine unfortunately is often still a matter of opinions.

The facts today are this:
1. We do not and will never know why this happened. What came first the chicken or the egg? The blood clot or the blood flow resistance....
2. We all can agree on one thing and that is that there simply stated is NO right answer.
3. Cleveland says TIPS shunt, U of M says spleen shunt. Both have the pluses and minuses, there is no long term history on either. As stated by one, generally patients who need a greater than 3 year plan favor surgical spleen shunts. Most patients with TIPS have liver disease and either die or need a liver transplant in a few years after getting their TIPS.
4. What I have will NEVER go away. Whatever we do will have lifelong maintenance, checkups, procedures, blood work, CT scans, and ultrasounds will forever be my life.
5. I am getting more confused and really don't know what to do....I feel like a lost sheep, no where to go, no where to run for shelter, left to decide. Isn't there someone else out there like me? Am I the only person in the whole world that has this problem? I actually have something that no one has ever dealt with and no one knows what to do about? HOW can this happen? and its happening to me!


We go for one more consult to Detroit on Thursday....I wonder what he is going to say. Am I nervous, excited, will I be more confused? One day at a time Lisa, one day at a time.....I am here today, the Lord has been with me and will continue to hold my hand, I CAN do this. I CAN do this.....Once again I battle with fear and want to run away and pretend this isn't happening, live in denial and just keep living the way I am, I want to cry out to the Lord and say that I don't know what to do. Maybe it will all go away....

Moving week. We must be out of our house by the end of the week. I am very excited and can't wait to live in our cute little farm house that we are renting. It is soo cute! I love it. I could honestly stay there...I have some country girl in me trust me, my dad may not believe me, but there is something about living away from it all. I can live with well water and look forward to seeing the majestic skylines with the sun falling just beyond the horizon of the 40+ acres....Peace, savoring life, my kids, my family and the Lord. One day at a time the Lord has a plan in this all!

SPECIAL TO ME

Karlie Joy, one of my greatest Joys in life!

I WILL PRAISE YOU IN THE STORM

I have had a great week! Oh ya, I have done my share of crying, but over all, I am getting better and better at talking about my storm without breaking down emotionally. I celebrated my birthday, my sons, lots of parties and had fun with family and friends, got to go to church, bible study all the things I LOVE to do.

34. What? Is that for real? Its true everyone, the older you get, the faster it goes. Just when you start realizing what true life is all about, finding yourself, accepting yourself flaws and all, loving the life the good Lord has given you, life goes faster and faster. Just doesn't seem fair. Guess that is why I tell my kids that quite a bit when they say "why?" Mom says b/c that's life, life isn't easy or always fair, you just have to do it.

At the great age of 34, I have had my share of storms. From a very young age I had terrible stomach pains leading to Colon surgery and removal, eye surgery, dead root canals never removed by my dentist, even though he said he did, killing 6 other teeth (ya, most of my teeth are now "fake" and I should have put that dentist out of business) diabetes when I was pregnant gave me a greater appreciate of eating the foods I love when I want to b/c it went away after Karlie was born. Karlie and I almost died together, she was physically shutting down after being stuck in the birth canal for over 3 hours of pushing and was resuscitated when she came out and taken to neonatal for 5 days while mom was placed on the "overflow" cancer floor the furthest rooms away from my daughter so every time I wanted to see her I had the pleasure of traveling across bumps and lobbies taking 15 minutes each time to get there. Then came Lukester, along with him came a broken back and separated pelvis, ripped abdomen muscles and I had the pleasure of leaving the hospital with my lovely granny walker leading to weeks of physical therapy. Not to mention the numerous infections and allergic reactions during that time. At one point, I remember crying in the bathroom wondering why the Lord was making me a Job (in the bible). Job was stripped of everything and had so many hardships in his life, way more than I ever experienced but haven't I had enough? Guess not.....because here I am today after experiencing much worse than all that listed above. Then I hear myself saying like I do to my kids, thats life, life isn't fair, you just have to do it. BUT I am now here to say that there is so much more to those storms of life and they all are part of HIS plan.

So this week I reflected on the Lord and my life and wondered, what is it that HE wants to accomplish? What does He want me to do? Where is this going to lead me? Why does he allow these storms? I can tell you that in many ways its the best thing that ever happened to me. I now have a LONGING in my heart to love and serve HIM more, to KNOW him, and get out of my comfort zone that I have been living in for way too long and try to venture out. This life isn't about me, its about HIM. I want to pour my heart out and show others what the love and grace of the Lord is all about and that they need to find that desire!! Not just live day in and day out, showing up to church, its so easy to stay in the comfort zone and say you know the Lord, but do you LIVE HIM???? I sure didn't. Once you do, you just want to scream it to the world. I am not sure where this will all lead, but it will go somewhere, I am not going to be still, and watch when I can do something. I keep singing in my head "use me Lord, use even me, little old Lisa"

I have learned many things through all of this:

1. First and foremost about the amazing Lord and His work in my life to make me who HE wants me to be. He has revealed himself in many ways and it has been amazing to look back and see his hand holding me and guiding me every step of the way. I could have never made it this far without HIM, without the many prayers being said on my behalf carrying me thru these times. He could strike me down just like any of us at any moment and yet He has still kept me here, by Grace he has saved me. Time is a wonderful thing b/c you can reflect on His amazing goodness to you, you can see HIS plan even when at the time you couldn't.

2. I have learned like my friend has said, there is a season for all things. This is my time to be a receiver she said, something I have never been very good at b/c I want to do it, I think I can do it all, and it has definitely humbled me and made me realize that I can't. Moms can't do it all, we need to rely and reach out to others and not feel bad about it! For goodness sake, we put too much pressure on ourselves! I am learning to reach out to others and I will be there for them in return. We are to act like Christians and not just say we are, be the hands and feet of Christ, help those in need, do something, not just say it, don't be afraid.

3. Some friends and family shine through and some don't and you quickly realize who cares and who doesn't. Like I have said before, this is hard for me. The true colors of individuals come through, and its hard to not let that affect me. This is where I have to pray hard.... Be the better person and don't turn my back on them when they need something. Pray not to become bitter. Do unto others as you would have had them do unto you. Repeat.... :)

4. Dr's.....hmmmmm where do I begin. It is VERY hard to find a Dr that is sincere and truly cares today, but I will say that it is possible. I have had many great ones, and many not so great. We live in a very different world today and Dr's have lost that humanity, personal touch, compassion that I feel every patient wishes they had. To treat them as they would their own mother, father, daughter....I think about one that said "I just don't understand why you would want a second opinion." U of M told you what to do, and I don't know what else you are looking for." Would he say that to his wife? Ooops, we did what U of M said and 2o years down the road we realize that was a mistake? Or another one that said "we could have a hayday with you if you really wanted us too doing all sorts of surgeries and procedures on you". Really? I don't even want to comment on that one. Another one said "are we doing this just as a favor on the side as a friend or is there a real request from a physician?" only after I said that it was official and he would be paid would he continue. Friend? He considers me a friend? ONE dr is supposed to make the decision on major life decisions? NO. I am here to tell you that Dr's are human, Dr's are sinners, Dr's make mistakes and I know they cannot know everything but then admit it and help us go to the one that does! Don't just leave us in the dark to be our own advocate and figure it out on our own. Take the time to look into my case, I realize its complicated and that it means that you have to spend more "time" than you probably care too on one patient but PLEASE we are talking about lives here! There is absolutely NOOOOO communication between physicians, they assume someone else is taking care of you, or basically "let it (me) be someone else's problem"

For those of you that have family friends, even yourself, if something doesn't feel right, or you just have doubts or questions....dont just settle with the one. Easier said than done, look at me, I would have signed right up with U of M if it weren't for my husband but thank the Lord I didn't. I just am so sick of not knowing what to do that I just want to do something!!! Keep going, fight, find another opinion, find another dr. There are a million of them out there and they all get paid, keep going till you ALL agree and feel confident with what is at hand. Don't always put soo much trust in just one. I work in the medical field people, I see mistakes happen all the time, its a fact of life, I realize there is no guarentee with any surgery or procedure but that is why YOU have to be confident with the Dr taking care of you. There are some that shouldn't be out there. I could keep on going but all I can say and plead with you reading is, don't always go with the flow and do what they say, especially if it doesn't seem right to you!

Tomorrow I get my veins in my throat wrapped again. This is what landed me in the hospital last time so I am alittle nervous but I now feel more prepared. I am going to beg him to leave them alone if he can....maybe they won't look so bad, thats my prayer today. Karlie and Luke, mom loves you and I will be ok.

And yes, we are going to get another opinion. I know I said I was done, but again my husband is keeping me grounded and we still do not have 2 dr's agreeing on anything. U of M states they are right, Cleveland says they are. They BOTH have very legitimate defenses and it is hard to decide. I am the one that has to decide. WHO do I trust the most? So we go to Henry ford hospital in Detroit for a tiebreaker. 2 out of 3, one will win. I pray that he doesn't throw a different opinion out there!!! Oh my word, I don't know what I am going to do then!!!! I am scheduled for the TIPS shunt in my liver on the 18th of March, will it stay on the books? Next Thursday will reveal. I could talk to you about the differences in the surgeries at hand and what the defenses are but it is pretty complicated to understand and I think you would think its boring. To me, it is soo interesting, the body is mind boggling, complicated, and amazingly made by the Lord. He has a PLAN, I just pray it reveals itself to me as we get closer to deciding.

WHY SO EMOTIONAL

Today I worked and I think I cried on 3 different occasions at work, and then all the way home. Sometimes I think I just can't take it and I feel like I am losing my ground, my faith, my confidence in myself that I CAN do this.....It just never seems to end. I try to be so strong and trust me, there are days that I obviously am not. And I don't even have it that bad!!! I could have cancer or some disease that there is nothing they can do about. There are patients in the hospital right now laying in those awesome beds (kiding!!! try it for 7 days, even just one!), getting blood transfusions, having surgery, radiation, spending hours thru chemo treatments, dying or crying b/c of pain and here I am just plain old crying having a hard day and feeling sorry for myself and scared that I can't do it. Lisa Marie, you could be so much worse please look at the positive in this!!!! Lord, can you help me with this one right now????

I have made the decision, the Lord opened the door for me at Cleveland clinic and brought me to the best dr I could ever ask for, praise the Lord! In that I do rejoice b/c I know HIS hand was in that all. If it weren't for my husband and the Lord, I would be at the U of M having major bypass surgery and have my spleen gone too but HE has prevented that, that whole thought just chills me. I look back and ya, I was ready to sign up, lets get this done, it sounded great, but I think I am just growing so weary that I throw my hands up and say, Lord, please end this b/c I don't know if I can take anymore. You hear the words "I think this might be the thing to do" and you honestly don't care you just want to do something. No one else around here is.

I called Cleveland today and insurance and I am ready to go. I asked the surgeon if I was YOUR daughter, what would you do? He said, I would do exactly what I am telling you to do. After studying your case some more in depth after meeting you, we cannot sit back and wait, we MUST do this or you WILL bleed again, you will clot again, things will keep getting worse. He even had another surgeon that will be doing the procedure already call me today and if we can do all the talking over the phone before the procedure we are going to try. He leaves tomorrow for Bangladesh for surgical procedures needed there but wanted to talk to me first and let me know that he will be away for a week, but He will work with Dr. henderson to develop the plan. We are aiming for the beginning of march. Better tell my husband right? He's so sick that he went to bed the second I walked in the door. Please Lord, prevent mom from getting this nasty flu or whatever it is that has stricken our whole family.

I am confident in this decision and I know its the right one. I am not going to go anywhere else for another opinion, I have my answer, and I place my faith in the Lord to carry out the plan.

So....Tomorrow is a new day. For the next few days I am going to pretend that nothing is wrong with me, we all know I am mental :) but at least nothing wrong physically and that nothing is going on inside of me. I am going to focus on my family, friends, spend time with my sisters, my beautiful kids, celebrate my birthday and also my sons!!! I am going to spend time with the Lord with no other thoughts racing thru my head. I am going to sit back, take a deep breathe and enjoy. I am going to be the wife, mother, daughter, sister, and friend that the Lord made me to be, I am going to celebrate my life and have fun. I am going to smile, joke and just be "me'.

I need it. I just need a few days in which I am not going to think about it, research the surgery taking place, or talk about it.....I just need to refocus and gain some confidence in myself back that I am ready, that the Lord is going to help me to the end and I cannot stop now.....

But just for a few days, I'm gonna just be ME. Oh that will be such a great feeling....I can't wait.

CLEVELAND VISIT #1

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

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

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

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

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

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

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

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

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

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

HOPE, Following God's Lead

I look at myself today, and I CANNOT believe that I am the same person that I was 2 weeks ago. I guess in many ways I'm not. This disease has completely changed my life in every way, but so has every little bump, let down, disappointment, and even the days of joy. LIFE, you can say, has had a whole new meaning and the Lord has used each little phase of this to change me, mold me, and yes, Shape me into who he wants Lisa to be. Have I enjoyed it? At the time its happening I have great struggle I will admit, it is definitely the hardest thing I have ever gone thru in my entire life I hope, but if this is how HE wanted to change me into what He wants me to be, then I accept this struggle. I accept the hardships in life and face them with confidence knowing that HE is using it to HIS plan and HIS purpose.

This week was a great week. I look around my house and its almost empty...If you haven't heard, the Lord decided to send that "right" buyer our way a few weeks ago and we have to be out by the end of the month. PERFECT timing....ya right! Then a friend of mine said, maybe it was perfect timing b/c the Lord is going to heal you, your gonna have surgery, come home and get a new home, new life, new start, your going to be able to leave it ALL behind, just the way the Lord had planned. (sooo true!!! I am holding on tight to that outlook!!!) Sometimes I have to laugh b/c I wonder just how much more He thinks I can take. Sometimes I just throw my hands up and say "Lord, I could use alittle break right now, my life is on uncertain grounds, we don't know what we are going to do, where are we going to live?" We leave tomorrow, and you guessed it....My kids started throwing up tonight, fever, and now mommy has to leave. I have no choice, I feel terrible, it breaks my heart! NOW? I can't stay!

HOPE. One word with an amazing impact on your outlook, emotions, passion, excitement. I didn't realize how powerful that word was until this week. The Lord opened the door and led me to a Dr. that specializes in me. My disease, my varicose bleeding veins in my throat, my blood clots, my high pressure inside my body pumping fast thru veins that can't handle the flow. The mess of what my body has become. So many clots in my major veins that we don't have anything left to work with, except create a surgery just for me. When I think about the realness, the seriousness, and mess of it inside my belly it makes me tremble with fear....I could be dead at any moment, and yet I am still here..... I love the Lord with all my heart and soul, why do I have that fear? I DO want to see the Lord, I DO.

Just when I thought I was so strong, ready to stay put together and face my friends at church, my pastor had to leave me with the most powerful message, he was speaking right to me and I cannot tell you how perfect it was for the future, even the past, that I have faced. GOD'S LEADING IN OUR LIVES. How will you and I respond? When you throw those hands in the air and say, what do I do?
1. Remind myself that GOD is always with me, guiding me. He has NEVER left me and even in the midst of this strange disease and the Dr's throwing me around from one to the next b/c they just don't know, I am NOT alone. God has been there holding my hand every single step of the way.
2. He will use me, not as I was, but who I have become b/c of HIM. He is shaping me to HIS purpose, to make Lisa who he wants her to be, and really, isn't that all that matters? I WANT to be who the Lord wants me to be, and if it takes hardships to get there, so be it. I want to be that person not just during those times, not only when I am struggling, but ALL the time.
3. God leads us step by step alittle at a time....there are times he has said, wait, no, shut doors and opened them. GOD has a plan, today and always even when we don't see it or know why, He has the whole picture in his hands.

Can you see why I should have taken a WHOLE BOX of Kleenex into church this morning. I looked like a train wreck walking out of there, I was so emotional and moved that I could hardly breathe!! Little Mrs. Martins told me that Don had a great message for me this morning, but she didn't warn me that I would be pouring tears into my coat! PERFECT. God knew exactly what I needed today just like every day. Don, you gave me the perfect gift, the reminder and faithfulness that God has a plan.

He opened this door to cleveland and I know he won't stop there. What am I going to do when its all done? That my friends is where the fun begins! Its been going so long that I almost can't imagine life any other way, its become who I am...Dr appoints, hospital stays, blood draws, injections, tests, CT's, MRI's, biopsies, scopes, pain....What am I going to do? I am going to be putting my faith into action and its gonna be on fire people! I want serve Him in anyway that my life can bring glory and honor to HIM. Help others, be there, be the friend, help those that are sick, cheer up with meals, watching their kids when they need to take naps, soooo many options and sooo much to do!!!!!!! The Lord gave me a great year of running my first ever 5k's, and not only that but getting firsts, seconds, 3rd. Do I say that thinking I am awesome, no not one bit, I never imagined even placing! But when I finished, I could feel the Lord with me, He gave me the gift of health back and I was running for HIM, and no one else, I could care less if I finish first or last b/c I am alive people!!! I am alive b/c of HIM. I have running shirts being made right now b/c someday I will be back and on the back it will say "TO GOD BE THE GLORY!". That my friends is what it is all about. Who am I? Absolutely nothing without the grace and love of my awesome Lord.

Driving tomorrow with HOPE, with God's lead, to a future that the Lord holds in His hands.

EMOTIONAL, TIRED, AND PRAISING OUR LORD

As I am sure you can imagine, it has been a MAJOR emotional rollercoaster for me over the past week. There wasn't a single day that past that I could make it without stopping, sooo tired, taking a break, and catching a nap with my precious little lukester sleeping next to me. It was the best feeling in the world, watching his little fingers, flipping his pipeys from hand to hand (ya, I know he's old for them, but I don't care!), just staring at him and reflecting on all the joy he gives my life.

Doesn't help that I have hypothyroidism on top of this, diagnosed in the ER last week, which also makes you very tired.....I knew I was going to get that! Runs in my family so no surprise but just another med that I don't like to take along with the fact that it can make you physically lose your mind! Anyone with thyroid issues will understand.

Everyone keeps asking me, so now what? Whats next? I say, I don't know.....My primary told me that he didn't understand why I wanted a second opinion. Hmmmmm maybe b/c noone really knows what it is I have, and my liver surgeon even admited that he just started doing these surgeries since he met me 2 years ago.....I thought my GI was working on a referal to the Henry Ford hospital liver surgeon in Detroit. Today I found out that isn't true, they didn't even call my insurance, she said my primary has too. Well, thats not true, but I called my primary and like they said, when a Dr's office says they are going to take care of it, we assume they mean it and we don't pursue it. But she said just like everyone else has said for over a week now "we will work on it." Really? Are you? Isn't anyone going to help me???

I got my labs drawn today and was discouraged to find that my hemoglobin is dropping....am I bleeding again? I called my primary, they never called me back. So I sit and wait. WAIT. Wait for what, for me to die? I called my liver surgeon last week at U of M and told him to sign me up for the surgery. He said he wanted to do it this week Wednesday! Um...Ok I said. Steve put me in my place and said no, we need to wait.....again, I am thinking wait for what? For me to die??? What other option do we have? We have to do something!

Then I reflect on the week and I can see the Lords hand everywhere I look. My bleed, even my allergic reaction to the blood transfusion was totally PROVIDENTIAL. Think about it....My liver surgeon told me that I would need a blood transfusion when I have my surgery. If this never happened I would be inti bated, laying at UofM in the middle of a 6 hour surgery, sedated and medicated with who knows what, and NO one would know I was having an allergic reaction to the blood until I probably went into cardiac arrest. How would they have known what it was, what med or reaction I was having when I couldn't physically TELL them what was happening. They would have had to guess. I probably would have died. Now we can be prepared. All in the Lords hands even when we don't understand. Shoot, if I can make it through last week I can make it through anything!

I had a close friend of mine that I have been praying for for years, that doesn't know the Lord, text me that she prayed! Do you know how excited I was!!! If I have to sacrifice myself so that someone else can come and know the Lord like I do, I will! Someone else very special to me hasn't had a sip of alcohol since the day I went to the hospital! I had a household full of friends come for an afternoon to pack up my house and someone from church gave us a storage rental to put it all in!!

I tell you what, most of you know me well that are reading this and you know that I am very strong (WAS) willed and I am NOT one that asks for help. I have always been independent, I can do it, I am superwoman, super mom, go go go go go!!! This has humbled me in the most amazing way and I have opened my arms and accepted help, I have asked for people to help watch my kids, I have asked for meals b/c I can't do it! I am allowing someone else take care of me instead of forcing Lisa to do it all alone and I realize that is what we are all here for!! We need to support, love, and HELP one another b/c we are the hands of christ and that is what we are called to do! We don't have to do it alone! I am not alone and people actually want to help me, it makes me feel sooo overwhelmed with emotion that tears just stream down my cheeks.

The Lord is alive and is with me and I feel his love just surrounding me and it is amazing! This life is not all we have and its time that we all start realizing that as a society, who cares what you drive, what your house looks like, do you think God really cares? Who are you going to live for, God, or the people that you think care but really don't? Oh man am I getting preacherish tonight! :) Sorry but I just can't hold back the Lords movement in my life.

So, I went to work today! I didn't think I would make it, and yes, I cried (surprise!) and I was very tired, and getting very upset about the physicians that I thought cared, but don't seem to want to help. How do people get anywhere with rare diseases and how do you get insurance to listen? I need help people and I don't know where to go and no one will help me b/c no one knows what to do with me!!!! I was so sad.

THEN IT CAME.....driving home, I get a call from my cousin who of all things is a Primary care physician at the cleveland clinic. He says "Lisa, I talked to my friend today who is a liver surgeon here about you, your symptoms, his advice and he said that there is ONE man that you HAVE to see, a man that is older, dedicated his whole medical career to portal hypertension, the bleeding from it, why it happens, the cures, the fixes, which is better, researched for years the surgeries out there for it, absolutely every aspect of it and he will know, his name is ______." BUT he doesn't take new patients. He is retired from research and is the director of the cleveland clinic. BUT I called his office and they agreed to let you see him." OH MY WORD!!!!!!!!!! Someone that knows and understands everything that I have!!! Someone that can help me!!! Someone that can guide me and give me direction!!! PRAISE THE LORD, tears were flowing out of my eyes again!!! People, friends, family....God has answered my prayer and I AM going to cleveland clinic to a man that knows everything about what I have, the ONE. The ONE I have been searching for. I may have to fight insurance to get there but I am going to fight every single day of my life till I get there, I AM SOOOOO EXCITED!!!!!!!!!!PRAISE THE LORD!!!!!!!! The Lord has a plan, He has my life in his hands and that gives me GREAT comfort. I love you all, keep those prayers coming! I am not close to done, I may have one foot in the grave already but I am not dead yet!

IT HAPPENED....MY FIRST BLEED

I cannot begin to describe the events that have happened in my life over the past 5 days.....I believe I am feeling alot like those that go through a death or funeral and can't remember anything, it all feels like a dream or a fog, you don't remember seeing people, talking to them, nothing. Its like 5 days of my life were a dream.

Last week I had noticed that I was starting to lose blood, my stool if I must say was turning black, and no one would believe me b/c my lab values were somewhat "normal"....I continued to get weaker and weaker and yes Jillian, delusional huh? I was seriously losing it and her and I knew it. I kept calling my primary dr telling them that I was soo tired, I kept checking my own blood pressure and heart rate, and on Wednesday I even had my friends do an EKG on me b/c I thought I was dying and having a heart attack. On Friday we went to U of M and the whole way I prayed to the Lord that they would take me and admit me, find why I was getting weaker, I looked at Steve, held his hand and said that if I went home I thought I would probably die.

I laid on the table and told my liver surgeon that I was bleeding, he didn't believe me and told us to go home. I slept on the way there, back and 13 hours at night...By Saturday I could barely move, I couldn't take care of the kids, I didn't want to eat and started getting nauseous. I prayed and cried out to the Lord because I knew I was dying. I decided to get in the car, drop the kids off to grandmas and drive to the hospital refusing to leave till they found out what was wrong.

I needed a blood transfusion and had lost over 4 units of blood in a week. I wasn't bleeding fast, one the of the veins in my throat didn't rupture or I would be vomiting blood, but something, somewhere was leaking, probably since I had my veins wrapped on the 14th of January. My disease or whatever it is that I have, is progressing quickly and it is time to take a more aggressive approach. Once you bleed, I am probably going to bleed again. Thank the Lord for my good veins in my arms b/c I am sure that I have had over 30 blood draws and IV's in the past 4 days, we contemplated a pic line, and I am sure that if we had known I would be there that long, we would have done it. I am so used to my blood thinner injections whats a few more pokes huh? When you are at the lowest you could be, you really don't care what they do to you b/c you become numb to it all.

Then wouldn't you know it, I had an allergic reaction to the 2nd unit of blood!! I never knew you could have that. I was in the ICU and within 10 minutes of the 2nd unit, I felt the blood entering my lungs, I could taste it, my chest was tight, I got a rash all over my body and my legs started going numb....I started hyper ventilating I was sooo scared. I kept calling out to the Lord to hold my hand, looking at Steve and trying to calm myself down telling myself that I could make it, that I was in a good place, that they would help me. You can imagine the nurses, dr's, everyone running around with panic...injecting me with with tons of medications to stop the reaction. My poor mom and husband watching it all go down, watching me die. It was horrible, a complete nightmare. After about 10 minutes I became stable, and then I was out, out for the night.....

Anyways, they did a scope on sunday and couldn't really tell where I was bleeding from but I did stop. They stopped my blood thinners the second I arrived and they knew what was happening and my blood levels were coming back up. They wrapped 5 more veins in my throat. I have had consults now with the interventional radiologists on what to do, my liver surgeon at U of M, and GI dr. Everyone has a different opinion and no one knows for sure what is best to do but we all know we have to do something. It was soooo frustrating being in the hospital when the very Dr's that know everything about me didn't even know I was there! They are the only ones that can help me and no one would tell me what was going on b/c no one there knows! Steve called my liver surgeon and was ready to chew him out and trust me, that guy felt like crap when he found out I was in the ICU with a blood transfusion, he couldn't believe it! It is VERY complicated. The "tips" shunt in the liver might not be possible b/c of all my clots, and if we do the other, it might not work or reclot and then we don't have any veins in my abdomen left to do anything else.....Some are only temporary, some have never been tried on a person my age and we don't know how long it will last.

We are working on getting more opinions, wherever it may be, I really don't care, I just need someone to help us. Steve and I finally started begging the Dr's to help us, if they don't know, help us find the people that DO know. We don't know what to do! I dont' know where that expert is, I need my dr's to tell me and they aren't even talking to us. So for now we wait....I have blood draws every day, I will get my veins wrapped again on the 15th, and hopefully by the end of the month I will have the next plan. Today I FINALLY got to talk to my GI dr, the girls in the office wouldn't let me talk to him when I tried to call from the hospital....He FINALLY acted sincere and like he cared and reassured us that he would help us find the person to go to. He obviously doesn't have a crystal ball and I realize that, but he thinks we have time for a second opinion. I know how it feels to bleed now, so if it happens again, we know what to do and everyone at Metro knows us now and they will now know what to do too.

Thank you to everyone for praying for me. I have lived the last few days in a dream fading in and out, and that is when I need your prayers the most b/c I can't. I KNOW the Lord is with me and I know He is sad to see me suffering like this, and He cries with me too. He is all that I have to get me through this, I honestly don't know what people do that don't have the Lord in their life when they have hardship come into their lives....I couldn't do it without Him. I cling to His promises, He has a plan, He has my life in His hands and that is my only comfort. People ask me what they can do? I don't even know what to say b/c all I can do is focus on one day at a time! I have soo much to think about that I don't even know where to begin. I am trying to regain my strength so that I can fight the next battle. Please, keep praying, I cannot tell you how much it means to me. Thank you sooo much for all your love and support,

Lisa