MAJOR DECISIONS

I pause before I begin this, not even sure where to begin....We had a consult on thursday and he gave lots of options (shunts, bypasses, venous reconstruction) all with negatives, some only last for a few years and need to be redone, some reclot and some don't work, some cause mental problems (I don't need to be any more crazy:) some might not even be possible b/c of all the clots I have inside. Unfortunately you are grey and there is no black and white with your case. We don't see this and we don't know why. Its not, oh, your Gallbladder is bad, it needs to come out. We don't know the answer. "Lets see what U of M has to say."

Wake up at 5am to head to U of M. I am sooo tired, so anxious, all I could do was pray the whole way. In a way, I was hoping they would admit me right then and there and just do something! I even had a bag packed in case I wouldn't be coming home. Mike (a world reknown liver transplant surgeon and close to my age! isn't that insane!) walks in, we hug. Hes a great guy and I have TREMENDOUS respect for him.

He pulls up my CT, looks at the ultrasound, and says....Heres my thoughts. I consider myself a Dr that doesn't jump right into surgery and tries alternative approaches first. When you came to me 2 years ago, we didn't know what the problem was and we tried cleaning the clot out, put you on blood thinners, and hoped for the best. That didn't work. The fact that you reclotted on blood thinners tells me something else is going on. We need to do something different, something more permanent, you have a "plumbing problem". Your blood system is like a pond, not a river. When you have a pond, things eventually start to grow in it and get all gungky. If it were a river, you wouldn't have that b/c things would keep moving.

I want to take your spleen out, connect the splenic vein to the renal vein (kidney) and create a shunt to bypass the new clot and relieve the internal pressure. I think this will cure you. I don't think you have a blood disorder, you have a flow problem. Why? We don't know....Maybe from pregnancy, maybe from your colon removal surgery (I had when I was 20). IF we do, it might reclot we don't know, I would keep you on blood thinners for maybe 2 years and if nothing, hopefully we can take you off them. The fact that your on that much blood thinner for the next 50 years potentially, your gonna have something happen just from that, I would like to get you off them. If it clots, we have taken away alot of options for future surgeries and procedures b/c then most of your veins are gone. You need an echo on your heart to make sure you can handle the surgery, immunizations for infections that people without spleens cannot fight, CT's to map your vessels, another ultrasound, we would cut you open from top to bottom, the surgery would take at least 6 hours and you would be in intensive care for at least 2 nights and in the hospital for 1 week. For 6-8 weeks after you cannot drive, you cannot work, you cannot be super mom. If you ever have a fever of 100 you need to go to the ER every time for life. Infections are the problem and what kills patients without spleens b/c they cannot fight them.

I am probably the only Dr in all of the midwest that does these types of surgeries. I found out that IS true, no one does it in michigan thats for sure.
He left the room and gave us time to think about what he said.

Steve and I just stared at each other....Me crying of coarse. We didn't even know what to say. In a way I was relieved to know that this could be the fix for life!! No blood thinners, I could actually be done with this all! Oh my word, I can't even begin to tell you how amazing that would be. But the big thing is his words "I THINK". If it didn't work, we would be screwed.

We left, not agreeing to anything, and told him that yes, we agree he is probably right, but we don't want to be "80%" sure, we don't want to know we are guessing. I called the Dr's from Thursdays meeting and he told me that if it were him and his wife, he would get a second opinion. Head to Cleveland, Mayo, Chicago, wherever that BEST vascular surgeon is and find him. If he agrees, then we know that we have 2 TOP brains thinking on the same page and we do it. BUT he also said, be prepared for a totally different opinion and then you are even more confused. Where do we go? He is going to help me find that 2nd opinion and asap steve and I will be heading there.

I went to bed last night at 8:30! Slept till 8:30am! Ya, mental R&R. I feel better today, I have millions of thoughts running through my head, don't know what to think or feel really.....My only comfort is knowing that the Lord has a plan. He is with me, He doesn't want to see me like this, He is going to help me get through it and give me the strength and help carry me, and I know that I will see Him if I am to leave this world.

TIME TO MOVE AND FIGHT!

I will admit it, I have really struggled this time. I have grieved more this time around than the first, or second. Maybe b/c I know that we haven't resolved anything like I thought, maybe b/c I know the pain that is to come and I am fearful of going through it again, or maybe b/c I realize that I am no better today than I was 2 years ago and I thought I was. I am not sure but boy has Satan had a hayday tearing me down. I think I cried all day this past Thursday and I was at work too! My surgeon from U of M sent me an email the night before saying that he had talked to my GI Dr. and to anticipate and plan for surgery. Thats all it said. No details, no this is what I am thinking, just the words Surgery.

So on my way to work I was talking with God, praying, and we had an amazing time together, the songs that came on my radio were like He was talking right to me! Even the songs from my blog came on! It made me cry even more b/c I knew and could feel He was with me and talking with me.
Satan has been putting so much doubt, fear in my head but I think I am over it now. Today I am ready to fight. I am ready to hit this head on and I KNOW that God is going to help me through it. There is No doubt in my mind that I can do this....I have done it before, and I am ready to do it again. I have cried enough and I am only going to look up, the Lord has me in his hands, I know he has cried and grieved with me, and we are going to do this!

I had an Ultrasound on friday revealing that most of the main blood vessels ARE flowing in the right direction. (this is good) BUT I have soooo many veins that are NOT supposed to be there, those new veins created to go around the clots, and those are the ones flowing in the wrong direction (not good). I have tons of clots, some of my vessels will never be open again. One of my lobes of my liver is almost gone, but the other one has grown bigger to compensate for the loss of the other. My spleen is getting even bigger! It is huge! Couldn't even fit it on the screen for measurement but we think it is over 21 cm, it was 18 last time, categorized as Extreme splenomegaly. (not good)

Game plan: Thursday I meet with the interventional radiologists from Spectrum/Metro/Holland and they will discuss what they think we should do. I am thinking that my liver surgeon wants to put a liver shunt in me like we had talked about before, but I want 2nd opinions. I am not having nothing done until we ALL feel confident about it b/c I don't want to just "guess" at the fix and suffer lifelong consequences for a bad decision. I was supposed to get one of those shunts before but that Dr wouldn't do it. Why? If he didn't, why do I want one now?
Friday I meet with my surgeon at U of M. He sent me another email after the results of the Ultrasound and says he has a "plan".
So I am excited for what the week has in store. Exploring the options, hearing what everyone out there is thinking. Maybe getting some answers. I may still go to Mayo with my case, we will see.
Till then, I am living one day at a time, loving my little bundles of JOY, thanking the Lord for each new day and giving God the glory for all the blessings in my life! Someday, this will all be a distant memory...................I praise you Lord for I am wonderful and fearfully made, even if I am "complicated" :)

Post Vein Wrapping....Can't sleep

Its 1am and I cannot sleep. The nice thing about the memory at least my lack of it, is that I don't remember being in this much pain last time but Steve does. I had my scope today to see if there were any veins in my throat and there were. Lots of them, Scary big and ugly, says Dr. Serini. When he says that, you know its not good. He had no choice he says but to start wrapping them. They wrap them b/c when they get big like that, they can rupture/hemorrhage, and mine are even getting red walled markings meaning those walls are very thin and it could happen at any time. Scary if they do obviously b/c I would start vomitting blood and I could die b/c I am on blood thinners at the same time.

I woke up from sedation and immediately knew that he had done something. I looked at the pictures and just cried. It looked so "pretty" just 9 months before, how can this all be happening again!!!????

I mentioned Cancer in a Facebook post earlier this week, No I don't have cancer, and I am VERY thankful to the great Lord that I don't, Trust me, I see it every day I am at work and there is nothing that breaks my heart more. But when people have cancer, they find out what kind, what to do about it, get a game plan, meet other friends that have that same kind of cancer to share thoughts, tears, joys and fears. I can't. No one knows whats wrong with me. No one knows how to fix it. Seems like we just keep putting band aids on me to hope I get by....Some say take your spleen out(its still huge!), some say its a clotting problem but we don't know which, some say its a flow issue and things dont' flow in my belly as fast as they should and this makes my blood clot, some say put shunts in the liver to make it flow faster, some raise their hands and even admit "I don't know." Is there anyone out there like me? It feels so lonely when you have no one to talk too b/c honestly no one understands how it feels when they don't know whats wrong with you or how to fix you......

I can see how Satan tries to bring me down. Health, or lack of it, can DEFINITELY play with your emotions BIG time. As some of you know, sometimes I just can't talk about it, sometimes I just start crying, somedays I am great and fine. Sorry to all of you that have caught me on my "bad" days :) Its really nothing you say or do, its just one of my "off" days and I am trying to be better at this and I am trying my hardest to be as positive as I can.

What now? I don't know. I have to go back to my hematologists and tell him the news, I have to talk to my surgeon at U of M and tell him the news, I am on double the blood thinners and go in a month to get more veins wrapped.

We will make it through this......Someday and somehow....All I can say is the Lord has a plan, He is holding my hand and I am sooo much better because I have Him with me. Thank you soooo much to everyone for your thoughts, prayers, emails, you have no idea how much it means and I truly love all of you.

2010 FAVORITE PHOTOS/ MEMORY HIGHLIGHTS

This was the best year of my life. I can say it was the first year I was truly ALIVE. I woke each day trying to live it to its fullest, not worried about all the trivial things in life and realizing how faithful the Lord has been to me. We went camping about 3 weeks to the conference grounds and Holland, we stayed in a cottage at the conference grounds with my sisters and mom, we stayed in a cottage at Brooks lake with all of the Jongsma family. We took 3 trips to Detroit to see Angie, Mark, Devon and Carson, this will be their last year stationed there in the Coast Guard. Steve and I finally got to go to the Dominican and it was sooo relaxing (we were forced to cancel due to my health the year before). We LOVE the outdoors, camping in our trailer mostly to the conference grounds b/c there is sooo much for the kids to do there with bible school pools and the lake. Karlie learned how to ride a bike with no training wheels, dad loves dirt biking on snow or not, running (moms first year of running real races and even took home medals, 5 in all!! Still cant believe it) I cannot tell you enough how much this year meant to me and how awesome it was...Life has a new meaning, family, friends, all took a new perspective and it was a great year!!!

SUMMARY AS OF JANUARY 6, 2010

Today I feel really positive and good. Some days, I am more emotional....Sorry to those that I have just cried before you even start talking. I don't know why. Overall, I think I am doing good. Its b/c this isn't the first time and the more it happens, the more prepared I am, and I know what it means, I know how to fix it, but its still hard....

I think what makes it the most hard is not knowing. What is it? Why did it happen? Obviously there is something wrong with my body but no one knows why. It "just happened". My friend Dr at work said, "I am not at all surprised that you clotted again". Really? And hes right, I have heard it before, once you clot a vein, it has a high tendency to clot again, its damaged goods. Sweet!

My clots are what comes first. But its what these clots do to me thats the problem! My Gallbladder is damaged, my spleen is HUMONGOUS, one of my lobes of my liver is now gone b/c a permanent blood clot has destroyed the veins going to that lobe. Thank goodness your liver regenerates itself and my left lobe has now grown to compensate. Then the big risk is those "VEINS". When I say that, I mean the huge, ugly, varicose veins that have been created by my body to get around these clots and like going around my stomach and esophagus. These "veins" aren't supposed to be there. They are not the ones clotted, they are a major highway that my body has made in defense to get the blood it needs from somewhere else. Isn't it just AMAZING!!!! I am sooo mind-boggled when it comes to how the Lord made us. These "veins" scare the crap out of me to be completely honest. I don't feel them, I don't know when they are there, but if they are there, that means I have a "clogging" problem going on and things aren't flowing well and these "veins" could hemorrhage the bigger they get. This morning I started coughing up blood clots....Coincidence? Maybe. Is it b/c they increased my blood thinner? maybe. Are they those "veins" leaking? Maybe. IF they leak or burst, I could easily die. I will never forget the words of my awesome Dr. Serini "if you do nothing about them, within one year you will die". Why? Think about it. How are you going to stop ruptured veins inside of you? Its not like you can put a bandaid on them. You can't put pressure on them inside your throat. (well there is a helmet in the ER's I have discovered with a huge tube they would put on me and insert the tube to inflate and push against my throat) Can't you just picture me with a football helmet on laying in the ER....Eeeewww! That scares the crap out of me just thinking about it!!!

So, we will see. Back to 2 injections daily for life, I knew that was going to happen. I am awaiting my Dr Serini to call me today I hope, to get me into that office asap so we can see if there are those "veins" in there! And if they are, lets start wrapping them! Steve and I want to go on vacation to the Dominican, I haven't booked it yet, b/c last time I did, Dr. Serini told us not to go b/c my veins were too big and I needed to be within 5 min. of a hospital....Your not going to see me going anywhere until I know what those veins look like. So, hopefully its soon. I HATE getting them wrapped b/c it hurts for days and I can't eat. But I don't have any choice so I try not to complain.

You all know me, I am a strong little cookie. I am thankful each and every day that it is me, not someone else, and especially not my kids. Cancer is a reality in my eye every single day I go to work. I am alive, what I have is livable, and I thank the Lord every day that it is this and not that. God has been so good to me through all this. He has shown himself to me, made my marriage 10xs stronger, made me closer to my patients, more serving to others, more appreciative of my life, my health, made my faith alive, and if my sickness is what it takes to make all of that happen, then I would do it all over again.