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Wednesday, December 30, 2009
Monday, December 28, 2009
Dec.28, 2009 In U of M hospital
today was a very emotional day for me. Steve and I were scheduled to arrive at 7:30am, we spent the night in fear of a long drive and weather. I was "supposed" to be getting a biopsy and a shunt placed in my liver called a TIPS. We arrived and were told that the radiologist scheduled to do my procedure did NOT want to do a tips. The reason we were told on arrival is b/c it was his first day back from vacation and only my liver surgeon thought it was possible. He never really showed it to the radiologist like we had thought, and today was the first time he saw my CT follow up since the last procedure he had done.
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:
- Wait for my liver biopsy results
- consult hematology again b/c we MUST get to the bottom of my clotting problem
- in a week I will be back here at U of M and either have a a major surgery, intense recannalization of all my veins (again, this is what we did last time, cleaning out the veins) or put a TIPS shunt in if indeed my liver is now failing b/c of all the blockage to my liver
I had a breakdown a few times throughout the day. One, b/c my family physician told me to go off my coumadin and it looks like during that time, I threw more clots, I can NEVER go off blood thinners. My PC doesn't take me or this disease serious and I feel like no one is listening except when I am here at U of M. Two, WHY is this happening!! What is wrong with me? Something MUST be wrong for me to clot like this. Like Cheryl my friend said, this is no longer the "fluke from Luke". This is VERY very serious. Not only serious but sooooo confusing and no one knows what to do!
Then go figure, I take some pain meds when I get to my room b/c my neck incision hurts so bad...Well, about 3 hours later I am dry-heaving and puking in the bathroom b/c I didn't eat with the meds and they made me sick. This ripped open my incision in my neck and I started bleeding all over. Talk about pain now! This time I am dealing with the pain and I will stay away from pain meds. I had to change rooms b/c my neighbor is so loud, talks on her cell phone and has it ringing NON stop, talks about diarrhea and runs to our bathroom every 10 minutes. I didn't ask, my Nurse actually couldn't take it anymore and decided I needed my own room. I was grateful :)
I have no idea what to think. I think about my awesome husband by my side, and my beautiful children at home. I WILL survive, I will be there for them someday 100%! I think about all my friends and family and the good Lord that holds my hand each day. Without the strength of the Lord I honestly don't know how I would make it. I think about giving up, but I can't.....Somehow, someway, this will come to an end, and I pray that it will be but a distant nightmare...
Goodnight. I am going to take some Ambien now and knock myself out for the night.
Tuesday, December 15, 2009
BACK TO U OF M
I have a very serious, rare and complicated health problem. I have blood clots in my veins of my abdomen. Primarily located in my liver, portal vein, and superior messenteric vein. Like my Dr at U of M says "I have a plumbing problem". These clots are causing back pressure in my veins and not allowing the blood to flow freely therefore giving me high blood pressure within these veins (Portal Hypertension). This back pressure is causing problems. The blood can't get where it wants too and quickly as it wants too so it has decided to bypass these clots and create new veins, giving me large veins in my esophagus that could hemorrhage. My Gallbladder is affected, Spleen, liver, and intestines.....
Why do I have blot clots? No one seems to know. I had colon surgery 10 years ago, there is speculation that it came from that. I could have been born with this and it not developed until now. It could have happened during one of my pregnancies. We may never know. When you have Dr's arguing about the course of action to take, and place you in the middle, they say "you decide". YA RIGHT! Very nerve wracking!
I have my hematologists working at solving the "why" factor. Why do I have blood clots??? I have my liver surgeon working at "fixing" the problem. He doesn't have a clue why or what, he just knows or thinks he can find a way to fix me. I have my Gastrointestinal Dr. working on the problems that have been created due to this situation "wrapping my varices", so that I don't hemorrhage.
Then there is the question: Stay on blood thinners or not? Some say yes, some say no. Some speculate saying -she could bleed and hemorrhage from the veins in my esophagus and this could be life threatening and almost unstoppable if she is on blood thinners.- if she's not on blood thinners she could throw more clots and essentially cut off the blood supply to my liver and everything else. Hmmm...
My husband is so good at describing all the variables and ideas, and the thinking behind it all. I told him its a good thing I have him b/c I don't even understand it all. I sit in the appointments crying and he is my ears listening and being level headed. I thank the LORD that I have somewhat of a medical intelligence from my career. If I didn't! Oh my word, I would be so lost right now!!!! Even more so than I am!!!! Its a scary world out there in the medical land. Different Dr's have different opinions, they all talk lingo about you hoping you won't understand...thinking that I have no clue what is going on. And really, I am to the point that no one really knows what to do.....
So, I put my faith and trust in the Lord that he will guide all of my Dr's to find the answers and do what is best. I can't be the only person out in this world that has this problem! Most people with this problem have liver disease or failure. I don't. Most people are little kids, I am not.
So, its on to option 2. A procedure call "TIPS." They are going to attempt to place a shunt in my vein to bypass the clots and get the blood flowing. Will this last forever? No one knows. Most people that get tips have liver failure and die before they ever have to find out if the TIPS actually could last forever, they get it to buy them time. In my case, I don't have to worry about my liver b/c it isn't in failure and we all hope that I can live a long time. So will the shunt work and how long, or will it just clot off too?? All things no one knows. But I guess it is worth the try and see how it goes. If this isn't possible then it is surgery. What kind? There isn't even a name for it. He would create a surgery for me, create a new vein system, really never done on someone else. SCARY!
I am having problems sleeping these days. My mind is just a racing. So many things to think about. If anyone out there knows ANYONE or ANY dr. that would give me a second opinion or thought, please let me know. Otherwise its back to U of M in a week or two for our 2nd attempt.
Why do I have blot clots? No one seems to know. I had colon surgery 10 years ago, there is speculation that it came from that. I could have been born with this and it not developed until now. It could have happened during one of my pregnancies. We may never know. When you have Dr's arguing about the course of action to take, and place you in the middle, they say "you decide". YA RIGHT! Very nerve wracking!
I have my hematologists working at solving the "why" factor. Why do I have blood clots??? I have my liver surgeon working at "fixing" the problem. He doesn't have a clue why or what, he just knows or thinks he can find a way to fix me. I have my Gastrointestinal Dr. working on the problems that have been created due to this situation "wrapping my varices", so that I don't hemorrhage.
Then there is the question: Stay on blood thinners or not? Some say yes, some say no. Some speculate saying -she could bleed and hemorrhage from the veins in my esophagus and this could be life threatening and almost unstoppable if she is on blood thinners.- if she's not on blood thinners she could throw more clots and essentially cut off the blood supply to my liver and everything else. Hmmm...
My husband is so good at describing all the variables and ideas, and the thinking behind it all. I told him its a good thing I have him b/c I don't even understand it all. I sit in the appointments crying and he is my ears listening and being level headed. I thank the LORD that I have somewhat of a medical intelligence from my career. If I didn't! Oh my word, I would be so lost right now!!!! Even more so than I am!!!! Its a scary world out there in the medical land. Different Dr's have different opinions, they all talk lingo about you hoping you won't understand...thinking that I have no clue what is going on. And really, I am to the point that no one really knows what to do.....
So, I put my faith and trust in the Lord that he will guide all of my Dr's to find the answers and do what is best. I can't be the only person out in this world that has this problem! Most people with this problem have liver disease or failure. I don't. Most people are little kids, I am not.
So, its on to option 2. A procedure call "TIPS." They are going to attempt to place a shunt in my vein to bypass the clots and get the blood flowing. Will this last forever? No one knows. Most people that get tips have liver failure and die before they ever have to find out if the TIPS actually could last forever, they get it to buy them time. In my case, I don't have to worry about my liver b/c it isn't in failure and we all hope that I can live a long time. So will the shunt work and how long, or will it just clot off too?? All things no one knows. But I guess it is worth the try and see how it goes. If this isn't possible then it is surgery. What kind? There isn't even a name for it. He would create a surgery for me, create a new vein system, really never done on someone else. SCARY!
I am having problems sleeping these days. My mind is just a racing. So many things to think about. If anyone out there knows ANYONE or ANY dr. that would give me a second opinion or thought, please let me know. Otherwise its back to U of M in a week or two for our 2nd attempt.
Friday, December 11, 2009
6th SCOPE/BANDING OF VEINS
I cannot sleep. Yes, I took a nap when I got home b/c I was so sedated, but I normally sleep fine at night. I have a ton of things running through my brain and cannot slow it down. I woke up with pain and unless I stay on top of my meds, the pain is unbearable.
It takes a whole day to recuperate and then some for me. All for 6 minutes of a procedure!!! How is that possible? I arrive 1 hour early, stay in the surgical room about 30-40 minutes, and then 2 hours in recovery. Come home and sleep the sedation off, and if they do banding, remain on as much drugs as I can and rest....Its terrible. Especially for me b/c I am NOT one to sit around and I never take naps. I felt completely withdrawn from my kids all day b/c I couldn't really do anything with them. I saw them, but its just not the same.
Dr. Serini was really quiet. Hardly spoke a word to me. I think its b/c there is nothing else he can do. He doesn't know why this is back, why it happened, and he doesn't know what they are going to do. He is a colon dr. not a blood vessel doc. He is dealing with the consequences of a primary condition and doing what he can to keep me alive in his realm of his specialty.
He said he has to band me again in a month.....Man it hurts! I have a high pain tolerance but this sucks. I don't know how they do it but somehow they wrap rubber bands around the root of the vein to kill off the blood supply and prevent it from getting larger and eventually hemorrhaging. Isn't that amazing?
He did say he spoke with Englesbe, my liver surgeon to tell him what he saw last week and that my varices are back. I wonder what Englesbe is going to do. I think it means a big surgery, a risky surgery, one that I could die from, b/c thats why we didn't do that option first. We were all hoping that this first attempt would work. I know they can't do nothing b/c I can't live like this. Realistically my veins will eventually hemorrhage and kill me, or the clots will kill me so what choice do I have.....
I know I shouldn't speculate b/c who knows...Maybe it won't be that bad. I just don't want to be away from my kids again. Last time it was 10 days for me and that was really hard on me. They would come to see me in the hospital but they didn't even dare touch me b/c they were scared off all the IV's in mom and Karlie was afraid she would hurt me. It made me cry.
Ok, I guess I will try to sleep again.
It takes a whole day to recuperate and then some for me. All for 6 minutes of a procedure!!! How is that possible? I arrive 1 hour early, stay in the surgical room about 30-40 minutes, and then 2 hours in recovery. Come home and sleep the sedation off, and if they do banding, remain on as much drugs as I can and rest....Its terrible. Especially for me b/c I am NOT one to sit around and I never take naps. I felt completely withdrawn from my kids all day b/c I couldn't really do anything with them. I saw them, but its just not the same.
Dr. Serini was really quiet. Hardly spoke a word to me. I think its b/c there is nothing else he can do. He doesn't know why this is back, why it happened, and he doesn't know what they are going to do. He is a colon dr. not a blood vessel doc. He is dealing with the consequences of a primary condition and doing what he can to keep me alive in his realm of his specialty.
He said he has to band me again in a month.....Man it hurts! I have a high pain tolerance but this sucks. I don't know how they do it but somehow they wrap rubber bands around the root of the vein to kill off the blood supply and prevent it from getting larger and eventually hemorrhaging. Isn't that amazing?
He did say he spoke with Englesbe, my liver surgeon to tell him what he saw last week and that my varices are back. I wonder what Englesbe is going to do. I think it means a big surgery, a risky surgery, one that I could die from, b/c thats why we didn't do that option first. We were all hoping that this first attempt would work. I know they can't do nothing b/c I can't live like this. Realistically my veins will eventually hemorrhage and kill me, or the clots will kill me so what choice do I have.....
I know I shouldn't speculate b/c who knows...Maybe it won't be that bad. I just don't want to be away from my kids again. Last time it was 10 days for me and that was really hard on me. They would come to see me in the hospital but they didn't even dare touch me b/c they were scared off all the IV's in mom and Karlie was afraid she would hurt me. It made me cry.
Ok, I guess I will try to sleep again.
Sunday, December 6, 2009
Being a MOM- to Karlie and Luke
One of my favorite things in life has been becoming and being a mom. I received a devotional book shortly after having Karlie and it has become my favorite one and I have now read it twice. Its all about being a mom. Here are some of my favorite quotes in it:
"Thank you Lord for the sweetest human experience thus far in my life"
"When it comes to love, until I saw that "+" on a little stick, I didn't know the half of it!"
"Father, I will never be able to thank You enough for my beautiful daughter but with my own life, I will try"
"My children have taught me that I have God-given instincts that I never would have believed until now"
"thank you for awakening in me a new kind of love-a love that shows me a clearer picture of the Love God has for me"
"God infinitely loves my children more!" and He does me too!
I remember a lot of things about my "old" life, the Lisa that could go anywhere I wanted, when I wanted too, no plans, staying up late because I WANTED too, sleeping in...but one thing I don't remember is what my heart was like before I became Karlie and Lukes mom. I can tell you, It has been completely transformed.
Nothing can put a smile on a moms face quicker than hearing little feet running towards the door and the exclaimed "Mommy!" as I walk through the door. The changes in my life are amazingly worth it. Sure I have days of frustration, feeling drained, but at the end of the day I wouldn't trade my life for anyone else's b/c of my children. I loved being pregnant and miss it so much. I don't miss getting them out, and I think I can say with confidence that mine were terrible, if you want to know why, I can gladly explain! (separated pelvis, broken back, 27 hours of labor, 3 hours pushing, both kids taken to neonatal, mom sicker than a dog, allergic reactions to meds...)
Some nights I lay in Karlies bed for hours just staring at her (yes she snores but not as loud as her dad!). Its just so hard to imagine that they are mine, they came from my body, they are so beautiful to me. I sneak into Lukesters room and just treasure the sound and smell of his room, even if he wakes up in the night, he's my last one and I try to treasure the moments b/c it won't be long and I won't be able to hold him in my arms, he's not going to want his mom and my days of cuddling and holding him will be gone. It makes me so sad to even think about it. Soon mom will be tossed aside and it will be on to more important things: school, friends, love (or so you think), sports...
They say life goes fast. Talk to one elderly person and they will bring it up, especially if you bring up the kids. No one told me it would go THIS fast! Sometimes I ask the Lord just to freeze time for a little while, b/c it just doesn't seem fair....The older you get, the faster it goes! They are small for such a short time! Pretty soon they will be off to school, and the days of being home with mom will be gone! Just when you finally realize you need to start appreciating what life you got, its almost done! You can't turn around and do it over so I make it my everyday effort to live it with no regrets. I often think of that song: "live like you were dying" that song has alot of truth to it. I think everyone would live so differently....
I'll be the first to tell you, I think everyone could use a little wake up call. I am not perfect, I am a terrible sinner, I have done so much wrong, I am not a very good wife at times, I am not the best friend I should be, and I am going to fail at being a mom too BUT I know I won't do any of it alone. My family, children, and friends see me all the time, and know me at my worst and it is my prayer that at these times they can see past me, and see Jesus.
That my friends is what has changed, my heart. It needs a TON of work and that work will never end, I just pray that it starts each day with my own little wake-up call, that Lisa needs to live each and every day as if it were my last. I want to do it, I am going to try hard to be a better wife, mother, sister, friend....I know I will fail, but I am going to keep on trying!
Karlie and Luke, not even Grandma Nyenhuis, loves you more than you mom does....Someday when you become a parent yourself you will totally understand how I feel and you will be in awe at the Love a parent has for their children. I love being a mom and you have made me a better person, you have taught me some valuable lessons I will treasure forever. I wish I could freeze time and just enjoy you one on one for days! Mom and dad, thank you for all you have sacrificed on behalf of me and for loving me so much....Its mind boggling!
Lisa
"Thank you Lord for the sweetest human experience thus far in my life"
"When it comes to love, until I saw that "+" on a little stick, I didn't know the half of it!"
"Father, I will never be able to thank You enough for my beautiful daughter but with my own life, I will try"
"My children have taught me that I have God-given instincts that I never would have believed until now"
"thank you for awakening in me a new kind of love-a love that shows me a clearer picture of the Love God has for me"
"God infinitely loves my children more!" and He does me too!
I remember a lot of things about my "old" life, the Lisa that could go anywhere I wanted, when I wanted too, no plans, staying up late because I WANTED too, sleeping in...but one thing I don't remember is what my heart was like before I became Karlie and Lukes mom. I can tell you, It has been completely transformed.
Nothing can put a smile on a moms face quicker than hearing little feet running towards the door and the exclaimed "Mommy!" as I walk through the door. The changes in my life are amazingly worth it. Sure I have days of frustration, feeling drained, but at the end of the day I wouldn't trade my life for anyone else's b/c of my children. I loved being pregnant and miss it so much. I don't miss getting them out, and I think I can say with confidence that mine were terrible, if you want to know why, I can gladly explain! (separated pelvis, broken back, 27 hours of labor, 3 hours pushing, both kids taken to neonatal, mom sicker than a dog, allergic reactions to meds...)
Some nights I lay in Karlies bed for hours just staring at her (yes she snores but not as loud as her dad!). Its just so hard to imagine that they are mine, they came from my body, they are so beautiful to me. I sneak into Lukesters room and just treasure the sound and smell of his room, even if he wakes up in the night, he's my last one and I try to treasure the moments b/c it won't be long and I won't be able to hold him in my arms, he's not going to want his mom and my days of cuddling and holding him will be gone. It makes me so sad to even think about it. Soon mom will be tossed aside and it will be on to more important things: school, friends, love (or so you think), sports...
They say life goes fast. Talk to one elderly person and they will bring it up, especially if you bring up the kids. No one told me it would go THIS fast! Sometimes I ask the Lord just to freeze time for a little while, b/c it just doesn't seem fair....The older you get, the faster it goes! They are small for such a short time! Pretty soon they will be off to school, and the days of being home with mom will be gone! Just when you finally realize you need to start appreciating what life you got, its almost done! You can't turn around and do it over so I make it my everyday effort to live it with no regrets. I often think of that song: "live like you were dying" that song has alot of truth to it. I think everyone would live so differently....
I'll be the first to tell you, I think everyone could use a little wake up call. I am not perfect, I am a terrible sinner, I have done so much wrong, I am not a very good wife at times, I am not the best friend I should be, and I am going to fail at being a mom too BUT I know I won't do any of it alone. My family, children, and friends see me all the time, and know me at my worst and it is my prayer that at these times they can see past me, and see Jesus.
That my friends is what has changed, my heart. It needs a TON of work and that work will never end, I just pray that it starts each day with my own little wake-up call, that Lisa needs to live each and every day as if it were my last. I want to do it, I am going to try hard to be a better wife, mother, sister, friend....I know I will fail, but I am going to keep on trying!
Karlie and Luke, not even Grandma Nyenhuis, loves you more than you mom does....Someday when you become a parent yourself you will totally understand how I feel and you will be in awe at the Love a parent has for their children. I love being a mom and you have made me a better person, you have taught me some valuable lessons I will treasure forever. I wish I could freeze time and just enjoy you one on one for days! Mom and dad, thank you for all you have sacrificed on behalf of me and for loving me so much....Its mind boggling!
Lisa
Thursday, December 3, 2009
Dec.2009-6 months of freedom
Well for 6 months I have lived the good life. I enjoyed my life to the fullest, went camping a ton with my children enjoying nature, Gods creation, and every moment truly taking in each little pleasure of LIFE.
I knew this time was coming, my 6 month check up. Everything was going great so I was very excited to hear the next step, I thought everything was fine and we could pull me off my meds, the procedure of cleaning out the clot at U of M was successful.
That was until last week. Thanksgiving. Again, I woke up thanking the Lord for life and all the many blessings He continues to give me when I am so undeserving. Went to church, ran 5 miles, (nothing new, my Dr's gave me clearance for it) finished and my stomach started to grow. I had the same feeling in my abdomen that started this whole thing, I was crampy, painful, and started to cry b/c for the 1st time in 6 months I realize that this whole thing just might not be over!
I had a scope today with my Gastrointestinal Dr today. He told me this weekend to stay on Coumadin (blood thinner) b/c he didn't expect he would have to do a thing b/c last time the varices (large veins) in my throat were gone and he did not anticipate seeing anything again. Well, I am sorry to hear the news and was fearful of hearing them from the very start b/c deep in my heart I knew what he was going to say. "They are back, they are large, the needed to be banded (wrapped and compressed) ASAP b/c they are looking like they are going to hemorrhage."
Meaning: my veins are back and large enough to hemorrhage, my pressure inside has NOT returned to normal, working out again has pushed my pressure up and my symptoms have returned b/c the clots have come back. BACK TO THE DRAWING BOARD!
I will be off my coumadin for the next week (good for my veins that could hemorrhage b/c that is scary for them) but it doesn't help with my clots. I hope I am making sense but these 2 things contradict each other and I don't know which they are going to choose. Coumadin=breaks up/prevents the clots Coumadin also makes your blood thin and with varices that is the last thing you want to be on with chance of hemorrhage. I will have them wrapped next week Thurs. and then on the 14th head to U of M to discuss the next step. Option one seemed to have failed, Option 2???? We had one at the time, I know it involves a very serious surgery with life threatening possibilities, but I guess I am there now again anyways.....
Today has been a very emotional day for me. Actually ever since last Thursday b/c I knew in my heart I was not healed as I had thought. I think about what I have already gone through, it seems like a nightmare, and I am scared. It seems so long ago and yet, it is all still so vivid in my mind....I don't want to die and I know that is one of my weaknesses I struggle with the Lord with, I shouldn't be, but I just can't believe all of this is happening again. I also know it doesn't mean I will die, but trust me, it is something I think about, it is possible. We have to do something to help me live a full life and it looks like we have to start over again.....
I just think about my husband, kids, today I just cling to them and savor their little miracles that have blessed my life in SOOOO many ways. I love my children and I am scared to leave them.....
Ok enough,
Goodnight.
Lisa
I knew this time was coming, my 6 month check up. Everything was going great so I was very excited to hear the next step, I thought everything was fine and we could pull me off my meds, the procedure of cleaning out the clot at U of M was successful.
That was until last week. Thanksgiving. Again, I woke up thanking the Lord for life and all the many blessings He continues to give me when I am so undeserving. Went to church, ran 5 miles, (nothing new, my Dr's gave me clearance for it) finished and my stomach started to grow. I had the same feeling in my abdomen that started this whole thing, I was crampy, painful, and started to cry b/c for the 1st time in 6 months I realize that this whole thing just might not be over!
I had a scope today with my Gastrointestinal Dr today. He told me this weekend to stay on Coumadin (blood thinner) b/c he didn't expect he would have to do a thing b/c last time the varices (large veins) in my throat were gone and he did not anticipate seeing anything again. Well, I am sorry to hear the news and was fearful of hearing them from the very start b/c deep in my heart I knew what he was going to say. "They are back, they are large, the needed to be banded (wrapped and compressed) ASAP b/c they are looking like they are going to hemorrhage."
Meaning: my veins are back and large enough to hemorrhage, my pressure inside has NOT returned to normal, working out again has pushed my pressure up and my symptoms have returned b/c the clots have come back. BACK TO THE DRAWING BOARD!
I will be off my coumadin for the next week (good for my veins that could hemorrhage b/c that is scary for them) but it doesn't help with my clots. I hope I am making sense but these 2 things contradict each other and I don't know which they are going to choose. Coumadin=breaks up/prevents the clots Coumadin also makes your blood thin and with varices that is the last thing you want to be on with chance of hemorrhage. I will have them wrapped next week Thurs. and then on the 14th head to U of M to discuss the next step. Option one seemed to have failed, Option 2???? We had one at the time, I know it involves a very serious surgery with life threatening possibilities, but I guess I am there now again anyways.....
Today has been a very emotional day for me. Actually ever since last Thursday b/c I knew in my heart I was not healed as I had thought. I think about what I have already gone through, it seems like a nightmare, and I am scared. It seems so long ago and yet, it is all still so vivid in my mind....I don't want to die and I know that is one of my weaknesses I struggle with the Lord with, I shouldn't be, but I just can't believe all of this is happening again. I also know it doesn't mean I will die, but trust me, it is something I think about, it is possible. We have to do something to help me live a full life and it looks like we have to start over again.....
I just think about my husband, kids, today I just cling to them and savor their little miracles that have blessed my life in SOOOO many ways. I love my children and I am scared to leave them.....
Ok enough,
Goodnight.
Lisa
Tuesday, September 22, 2009
Summary of Summer 2009
We had an unbelieveable summer. We camped at Grandhaven for a week, Holland State Park for a week, Cottage at Brooks lake, Cottage at Conference grounds, camping at Conference grounds, and we ended it with a camping night in Grandpa and Grandma Nyenhuis' front yard!
We absolutely LOVE camping. We learned alittle more each and every time to make things easier on the kids and mom! I absolutely enjoyed each and every day. It was a beautiful summer for me. Maybe b/c I appreciated life all the more! I look at my children and cheerish them so so much! They are the love of my life and I love being a mom. Sometimes I am not a very good mom and I have my struggles but I pray for their lives, I pray they realize how much I love them, that I would do anything for them, and I pray they have a wonderful life and love their Lord.
Sometimes at night I go in their rooms and just stare at them. They are so beautiful. Karlie is such a sweetheart, big sister, and so loving. She loves her Lukester and I pray they have a wonderful relationship b/c they are all they are going to have! Sometimes she cries when I tell her I can't have any more babies, she wants a sister. It makes me feel bad but someday when she is a mom, she will understand what mom went through.....
Lukester is such a doll, he melts my heart all the time. He loves his mom, and he is such a boy, running, jumping, throwing, screaming, and loving dirtbikes already! I just don't want them to get old. Lord, can't you freeze time for just a couple of years so I can stay where I am right now for....10 years???? I don't want to get old, I don't want my kids to get old. I love the life we have and cheerish the days we have!
CONFERENCE GROUNDS 2009
We have a yearly tradition of going to the conference grounds and staying in the cottages (we had 4 this year) with all the aunts, cousins, and kids.
We ended up having so much fun that we decided to stay another week in our camper. Highlights always include: the candy store, swimming pool, bibleschool and the playground. We also bought a kite this year and the kids had so much fun taking turns flying it.
We watched a meteor shower, and had fun having a fashion show with new clothes from Grandma N! We LOVE camping!!
BEEN AWHILE! (END OF SUMMER)
Luke 1&1/2, Jackson 2, Karlie 3&1/2, Alexis 6, Dylan 4, Kinsley 2 mo., Sophia 3 mo.
We spent a week in a cottage on Brooks lake near Newago with the Jongsma family.
We had a great time and beautiful weather. The kids were so tired by the end of the week, Karlie got sick with the flu for a few days, and that wasn't much fun for her!
The highlights of the week included: 1st time tubing for Karlie, feeding attacking geese, paddleboat rides, speedboat rides, Uncle Dave crashing a Jetski, throwing waterballoons,
and beanbag contests and our new favorite board game (????). We hope to keep the tradition going.
Monday, July 13, 2009
Great news, no doctors for 6 months!
My surgeon called me a few weeks ago after my 4th upper scope with more banding of my veins in my esophagus and he told me that everything looked great! My veins were going down, some of them were gone, and the best news: I don't have to do a thing for 6 months. I almost don't even know what to think or feel, its just so crazy to go through all I have in 2 months with so many appointments, procedures....to nothing! Its all I have been thinking about, dreaming about, every waking moment, I wonder whats next......
Its awesome and an amazing feeling to know that hopefully this is all behind me and will only be but a terrible dream to me someday. Yes, I still am on injections but life could be worse, MUCH worse and for the time, I am going to rejoice in the Lord for He is good, and He has blessed me in soooooooo many ways. I have a wonderful life, thank you Lord!
Holland camping 2009
I have been enjoying this summer so much! We got a new camper so this was our 2nd time and we had so much fun. The weather wasn't the greatest but none the less, I love spending time in nature, with the Lord, and enjoying my life right now with my children.
Sunday, June 21, 2009
Thursday, June 18, 2009
Camping in Grand Haven June 2009
So we took our first attempt at Camping in our new camper this year. Karlie is 3, and Luke is 1 year and 4 months. The first night was not that great. It didn't take us long to set up camp being in a trailer is really easy, but the kids would NOT go to bed that night and it was just me, Mom. They finally crashed around 11pm, Luke was up 3 times in the night crying, finally I took him in bed with me and Kar, and he was up at 6:15. Crabby! He wanted to go outside and it was raining, he woke up Karlie, and they were both sitting there crying. Mom loaded them up and we went home, not even 24 hours later! We went home took 3 hour naps (all of us) and took a bath and headed back out. By then the sun was out and all was well. The rest of the week went great! I think they just needed to adjust, its all new to them, its alittle scary away from home, and they loved it! We had a great time. The weather was perfect, dad came to stay a few nights, and even though mom was DEAD tired herself and it is alot of work with 2 little babies, it was all worth it. The worst part: coming home and cleaning up and getting back to life! I could sit by a campfire all night long!
It was great spending time with my kids alone, playing, riding bikes, going to Arts and Crafts fair, getting icecream, walking the pier and watching the fishermen....Just soaking up the beauty of this earth and all the Lord has blessed us with. I can't wait to do it agian!
Tuesday, June 9, 2009
KIDS SAY THE CUTEST THINGS!!!!
Mom: I am going to have Mrs Jenny show us how to attach the bike trailer to my bike to that I can pull you and Luke behind my bike and we can take bike rides at night.
Karlie: We can do it just like Dad does, put it on our hitch. Oh thats right, bikes don't have hitches. (6/8/09,3 years old)
Mom: I wasn't at the memorial parade with you because I was sick.
Karlie: oh ya, thats right, you were getting new veins in your throat with rubber bands.
(after that statement we had a LONG discussion about Dr.'s and putting mommy to sleep with medicine so nothing hurt, and how did the Dr go down my throat? How did you get the Dr out?)
(6/8/09,3 years old)
Mom: Dad was with mommy in the hospital
Karlie: Was he getting fixed too?
Mom: No, he just stayed with mommy to hold my hand
Karlie: And to give you lots of kisses?
Mom: yes
Karlie: Awe, You should tell him Thank you! That was so nice. (she was so happy!)(3 years old)
to be continued.....
Mom: Great Grandma is going to go to heaven soon, we need to ask Jesus to take her
Karlie: Do we all get to go to the same one?
Mom: Yes
Karlie: Oh yeah, I am so excited to go there, I want grandma to be there, mommy.....I love you mommy, do you want a bear hug?
Mom: Karlie, your gonna be a cool dirtbiking chick! (she just got her new PW 50)
Karlie: Mom, chickens don't ride dirtbikes!!! She thought that was so funny that I would say that, and I thought she was so funny, but she didn't know why obviously. Super funny! (1-6-2010, Karlie 4 years old)
Mom: Karlie, I really don't want you to do my hair, I just did it and I don't want to do it again.
Karlie: But mom, its just alittle makeover and everyone likes those! (April 2010, 4 years old) I have no idea where they come up with such things!!!!!
So my son came up to me this morning with his PJ's unzipped. Thats wierd I thought, until he said "shot" and looked at me, in his hand was a fake srynge from a toy Dr's kit and he gave himself the "shot" in his stomach and smiled at me. It was so sweet! Just like he sees mom do it everyday! He is so smart! (April 9,2010, 2 years old)
Karlie (5): Mom luke just burped and something came out of his mouth!!!"
(I come and look, luke threw up all over the couch! Not going to bible study this morning!:)
Karlie: I looked at him mom and it almost made ME throw up!
Luke and I laying in bed (almost 4 years old) "I'm not afraid of the dark mom"
Me: "your not!!?"
Luke: "nope, Jesus keeps me safe"
A different night laying in bed (Luke was crabby and wouldn't go to sleep)
Me: "boy, you sure are crabby, who did you come from?"
Luke: "jesus"
Me: "your right, you DID come from Jesus"
Luke: "ya, b/c I don't want satan in my heart"
Me: "thats right buddy, you don't. And someday Jesus is going to come again and satan and him will have a fight and do you know who will win?"
Luke: "jesus"
Me: "yup!"
Luke: "YYYYYEEESSSS!!! and gets all excited flipping around"
Luke and I were driving to school to drop something off to Karlie and listening to WCSG, the announcer says, and that was Jeremy Camp
Luke: "MOM!!! Did you hear what he said?!!!!
Me: "Yes...???"
Luke: "HE said Jeremy camp!!!"
Me: "ya???" (not having a clue where this was going)
Luke: "That means we are going to go camping soon with Jeremy!!!" (alittle friend he met last summer at Holland state park while camping. :) TOoo cute!! He was soooo excited!!!
Luke and I were taking a bath (dec. 2011, almost 4)
Luke: Why does your stomach look like that mom?
Me: oh, b/c mommy had a big surgery and from my shots everyday (its black and blue)
Luke: thats gross!
Same day, I went shopping for Karlie (6)
Me: I bought you some new underwear b/c yours is getting too small
Karlie: There NOT as big as yours are they!!!!???
Me: I just don't want time to go fast and I wish we could stay right where we are forever!!! I want you to stay my little buddy!!
Luke: "Do you want me to stop eating?" (June 3, 2012, 4 years)
Luke, Karlie and I were camping at the conference grounds this week and Luke came running up to me and said "Are you not sooo happy that I found this new friend mom?" He was so proud to make a new friend at the playground. It was so cute!
Karlie continues to say "come on Bro, come to big sissy" (aug. 2012) oh my
Karlie: We can do it just like Dad does, put it on our hitch. Oh thats right, bikes don't have hitches. (6/8/09,3 years old)
Mom: I wasn't at the memorial parade with you because I was sick.
Karlie: oh ya, thats right, you were getting new veins in your throat with rubber bands.
(after that statement we had a LONG discussion about Dr.'s and putting mommy to sleep with medicine so nothing hurt, and how did the Dr go down my throat? How did you get the Dr out?)
(6/8/09,3 years old)
Mom: Dad was with mommy in the hospital
Karlie: Was he getting fixed too?
Mom: No, he just stayed with mommy to hold my hand
Karlie: And to give you lots of kisses?
Mom: yes
Karlie: Awe, You should tell him Thank you! That was so nice. (she was so happy!)(3 years old)
to be continued.....
Mom: Great Grandma is going to go to heaven soon, we need to ask Jesus to take her
Karlie: Do we all get to go to the same one?
Mom: Yes
Karlie: Oh yeah, I am so excited to go there, I want grandma to be there, mommy.....I love you mommy, do you want a bear hug?
Mom: Karlie, your gonna be a cool dirtbiking chick! (she just got her new PW 50)
Karlie: Mom, chickens don't ride dirtbikes!!! She thought that was so funny that I would say that, and I thought she was so funny, but she didn't know why obviously. Super funny! (1-6-2010, Karlie 4 years old)
Mom: Karlie, I really don't want you to do my hair, I just did it and I don't want to do it again.
Karlie: But mom, its just alittle makeover and everyone likes those! (April 2010, 4 years old) I have no idea where they come up with such things!!!!!
So my son came up to me this morning with his PJ's unzipped. Thats wierd I thought, until he said "shot" and looked at me, in his hand was a fake srynge from a toy Dr's kit and he gave himself the "shot" in his stomach and smiled at me. It was so sweet! Just like he sees mom do it everyday! He is so smart! (April 9,2010, 2 years old)
Karlie (5): Mom luke just burped and something came out of his mouth!!!"
(I come and look, luke threw up all over the couch! Not going to bible study this morning!:)
Karlie: I looked at him mom and it almost made ME throw up!
Luke and I laying in bed (almost 4 years old) "I'm not afraid of the dark mom"
Me: "your not!!?"
Luke: "nope, Jesus keeps me safe"
A different night laying in bed (Luke was crabby and wouldn't go to sleep)
Me: "boy, you sure are crabby, who did you come from?"
Luke: "jesus"
Me: "your right, you DID come from Jesus"
Luke: "ya, b/c I don't want satan in my heart"
Me: "thats right buddy, you don't. And someday Jesus is going to come again and satan and him will have a fight and do you know who will win?"
Luke: "jesus"
Me: "yup!"
Luke: "YYYYYEEESSSS!!! and gets all excited flipping around"
Luke and I were driving to school to drop something off to Karlie and listening to WCSG, the announcer says, and that was Jeremy Camp
Luke: "MOM!!! Did you hear what he said?!!!!
Me: "Yes...???"
Luke: "HE said Jeremy camp!!!"
Me: "ya???" (not having a clue where this was going)
Luke: "That means we are going to go camping soon with Jeremy!!!" (alittle friend he met last summer at Holland state park while camping. :) TOoo cute!! He was soooo excited!!!
Luke and I were taking a bath (dec. 2011, almost 4)
Luke: Why does your stomach look like that mom?
Me: oh, b/c mommy had a big surgery and from my shots everyday (its black and blue)
Luke: thats gross!
Same day, I went shopping for Karlie (6)
Me: I bought you some new underwear b/c yours is getting too small
Karlie: There NOT as big as yours are they!!!!???
Me: I just don't want time to go fast and I wish we could stay right where we are forever!!! I want you to stay my little buddy!!
Luke: "Do you want me to stop eating?" (June 3, 2012, 4 years)
Luke, Karlie and I were camping at the conference grounds this week and Luke came running up to me and said "Are you not sooo happy that I found this new friend mom?" He was so proud to make a new friend at the playground. It was so cute!
Karlie continues to say "come on Bro, come to big sissy" (aug. 2012) oh my
Monday, June 8, 2009
Trying to move on with Life
I have to say that I am acting like nothing has ever happened. Do I think about my health and what happened alot? Absolutely. Am I worried? Absolutely. I can't believe that I am the same person sitting here today that I was 2 weeks ago laying in a hospital bed in so much pain and so much mental frustration wondering what to do with myself when it seemed no one else did either.
I don't know if I am done with "stuff"....I wish I was. I feel pain in my chest every now and then and start to worry, wondering if its normal. Sometimes I lay in bed wondering if I am going to die. Will I live to see my 40th? 50th? My kids get married? Only the good Lord knows. Sometimes I struggle with the thought of death and I am afraid of it, I will admit that I am weak when it comes to the idea of leaving this earth behind, my family. Even though I KNOW I am going to such a better place! I know that no one knows when our time on this earth is done, but it gives me fear....I don't want to die. I tell you what, I sure think about the saying a whole lot more "live each day as if it were your last!" I have changed and I am glad. This has all made me such a better person. I can't even begin to describe it but I have so many feelings and so many thoughts running around, things I want to do, people to see, just living and enjoying LIFE!
I have another banding procedure in a week, I cancelled it and pushed it off a few days b/c I just don't want to go! I don't want to do anything else.....But I know I have to. Maybe he will be happy with what he sees. Maybe I won't have to have these "veins" wrapped anymore. That would be so nice!
My kids are awesome. Sometimes Steve comes home and asks me why I go everywhere and do so much with them? Why not? I want them to experience life, I want to explore, see the world through their eyes, be together, and enjoy every moment I have with my kids! I don't care if we are home or away, I just can't get enough of them. God made me a mom and for that I feel so blessed!
I don't know if I am done with "stuff"....I wish I was. I feel pain in my chest every now and then and start to worry, wondering if its normal. Sometimes I lay in bed wondering if I am going to die. Will I live to see my 40th? 50th? My kids get married? Only the good Lord knows. Sometimes I struggle with the thought of death and I am afraid of it, I will admit that I am weak when it comes to the idea of leaving this earth behind, my family. Even though I KNOW I am going to such a better place! I know that no one knows when our time on this earth is done, but it gives me fear....I don't want to die. I tell you what, I sure think about the saying a whole lot more "live each day as if it were your last!" I have changed and I am glad. This has all made me such a better person. I can't even begin to describe it but I have so many feelings and so many thoughts running around, things I want to do, people to see, just living and enjoying LIFE!
I have another banding procedure in a week, I cancelled it and pushed it off a few days b/c I just don't want to go! I don't want to do anything else.....But I know I have to. Maybe he will be happy with what he sees. Maybe I won't have to have these "veins" wrapped anymore. That would be so nice!
My kids are awesome. Sometimes Steve comes home and asks me why I go everywhere and do so much with them? Why not? I want them to experience life, I want to explore, see the world through their eyes, be together, and enjoy every moment I have with my kids! I don't care if we are home or away, I just can't get enough of them. God made me a mom and for that I feel so blessed!
Monday, June 1, 2009
Letter of Thanks to so many!!!
Dear family and Friends,
I cannot tell you enough how grateful and blessed I am because of you all! What I have been through over the past 2 weeks has been unexplainable in so many ways, and has changed my life forever. I am home, I have returned to being a wife and mother, and tonight I am soooo tired! :) I am trying to take it slow but I think most of you know that is impossible for me, plus, I have 2 little ones that run more than I do!
It feels great to be home and I feel so blessed to have my army of warriors out there praying for me! It worked and God does answer prayers b/c I am proof of it! The Dr.'s were all amazed at the last CT scan and are amazed at how great things looked. The surgeon told me when we were leaving that I am lucky. I think I have a better word for that and it is all b/c of you! I couldn't have made it without all of you praying for me, for holding me up when I was at my lowest, and honestly, I didn't know if I would be seeing anyone again.
Am I "fixed"? No. Do I have something wrong with me? Yes. Am I on my blood pressure meds, blood thinner injections, and more? Yes. But the big hurdle is out of the way and hopefully over time, my body will return to normal. I have a year of tests and lots of blood work, but hopefully with close monitoring, I won't have to have any more surgeries.
Words cannot explain how much I felt your arms around me and the love of the Lord through all of you. It is something that I have never felt so strongly before. Last thursday night something just happened, it was like a light switch inside of me, and all of a sudden my pain went away. After that, the Dr's came with the great news that I could go home, that we didn't have to do surgery again. I cried and cried tears of joy, tears of gratefulness, tears of thanks to the good Lord above. I am crying right now just thinking about it! God is soooooo good!
Thank you, thank you for all you have done. For all of your thoughts and prayers. I could have never made it without you.
Please, share this with anyone you know that has lifted my name in prayer and tell them Thankyou!
I love you all!
Lisa (Steve, Karlie, and Luke) Jongsma
I cannot tell you enough how grateful and blessed I am because of you all! What I have been through over the past 2 weeks has been unexplainable in so many ways, and has changed my life forever. I am home, I have returned to being a wife and mother, and tonight I am soooo tired! :) I am trying to take it slow but I think most of you know that is impossible for me, plus, I have 2 little ones that run more than I do!
It feels great to be home and I feel so blessed to have my army of warriors out there praying for me! It worked and God does answer prayers b/c I am proof of it! The Dr.'s were all amazed at the last CT scan and are amazed at how great things looked. The surgeon told me when we were leaving that I am lucky. I think I have a better word for that and it is all b/c of you! I couldn't have made it without all of you praying for me, for holding me up when I was at my lowest, and honestly, I didn't know if I would be seeing anyone again.
Am I "fixed"? No. Do I have something wrong with me? Yes. Am I on my blood pressure meds, blood thinner injections, and more? Yes. But the big hurdle is out of the way and hopefully over time, my body will return to normal. I have a year of tests and lots of blood work, but hopefully with close monitoring, I won't have to have any more surgeries.
Words cannot explain how much I felt your arms around me and the love of the Lord through all of you. It is something that I have never felt so strongly before. Last thursday night something just happened, it was like a light switch inside of me, and all of a sudden my pain went away. After that, the Dr's came with the great news that I could go home, that we didn't have to do surgery again. I cried and cried tears of joy, tears of gratefulness, tears of thanks to the good Lord above. I am crying right now just thinking about it! God is soooooo good!
Thank you, thank you for all you have done. For all of your thoughts and prayers. I could have never made it without you.
Please, share this with anyone you know that has lifted my name in prayer and tell them Thankyou!
I love you all!
Lisa (Steve, Karlie, and Luke) Jongsma
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