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:
  • 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.

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.

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

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