Liver Clinic Follow Up

I had my follow up at the Liver Clinic on yesterday and it looks like we are ending this year on a high note!  The doctor was happy with all my recent lab work and scans. We talked a little about everything, I got my flu shot and we were on our way!  But I thought I would share a quick little run down for those who wonder what these appointments are like.

I got checked in and they gave me my hospital bracelet. The hardest part of my appointment is always the waiting to get into a room.  We are supposed to arrive 30 minutes early but it usually takes a good 45 minutes before you are called back.  And there were quite a few people there this morning so I knew it would be a little wait.  As long as I have been doing this, I still get a little antsy while I wait.

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Liver Clinic

I had my follow up with the liver clinic on Monday and the week went downhill from there. Its just been another one of those weeks that I really had to struggle to get through.  It was hard to find the good.  It was hard to find a smile.  It was just hard.

Before I left for my brothers homecoming the first week of April, I got a cold.  Thankfully while I was in NC I was fine until that last day and I could feel that scratch in my throat.  A few days after getting home it hit me again.  Hard.  And now here we are the first of May and the only thing that has gone away is the fever.  I know a cough can stay around for a while, but this isn't just a lingering cough.  Its a clearing out the lungs, hacking, wet cough.  I have been praying I wouldn't have to go to the Dr, but tomorrow we are headed to the clinic.  Who knows, maybe they will just send me home and tell me to suck it up.  Maybe I actually have something. Sometimes, it just feels like I am always sick and I don't know the difference anymore.  According to the Dr at the Transplant Clinic, I just need to stop doing nothing.  I'm not bitter about that at all...

As far as my appointment went, it was pretty deflating.  I have gained 5 lbs in the last 7 months. And I knew she was gonna be unhappy about that.  According to my doctor I am to young to be sitting around doing nothing and now that the boys are both in school, I have plenty of time to do things.  Yeah like clean, cook, tend to the dogs and parent.  Some days even taking a shower is exhausting, but I'm pretty sure she has no idea what I'm talking about.  She also suggested I see the Psychiatrist about my anxiety. Been there, not sure I want to go back. I think I will just start running again. She also to me to see my primary doc about the cold.  But all in all, my liver is still hanging on. The polyps are not growing. And even with the clots and blockages, I am getting a good enough blood flow to my heart. I haven't gotten my lab results back yet but they will probably be the same as always. And I have more labs and another MRI scheduled for June. The hardest part of the whole appointment was hearing that I could stay in this condition for years or one day I could just go into liver failure. That is the hardest part about this, the waiting. Waiting for yellow eyes, ascites, more pain, heart or kidney failure.  I will never know when its going to hit, I just have to find a way to put that fear to the side and live my life. I know this, but sometimes I lose sight of it.

Despite it all, at the end of the day, I am still able to look at the life I have and be thankful.  Even with all the frustration and sadness, there is so much to smile and laugh about.  I have some of the most amazing friends and family.  Just today my friend brought me a get well jar over.  The peppermint tea was just what I needed. Man did it hit the spot.  Seriously, how thoughtful is this. Tea, Ricola, Garlic Pills and 3 dollars for a Hope for Kim band.

 

I guess its time to regroup.  Time to focus on all that I have.  Time to push myself past the limits that have been holding me back. But first, I have to tackle this cold or what ever the heck it is. Pray that tomorrow brings me answers!  

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Updated MELD score

I have received others like it.  This letter.  It didn't matter though! When I saw it in between some other envelopes, my heart still stopped. Now that I look back, it is silly that I got so worried.  I tucked it into my purse and it took days before I could get the courage to open it.  I don't even know why I was so afraid.  It just looked scary.  And it was light.  Most letters I get from them are pages full of orders for my upcoming tests and appointments.  But one little page... I panicked.  Want to know what it was?  Orders for labs so that I could take it to the lab closer to home and would not have to go down to the Transplant Clinic.  Yup I was afraid of nothing!  Seriously.  What was I thinking?  Well actually I was worried they were going to tell me I was off the transplant list.  Or that there was something else wrong.  What can I say.  I'm a worrier.

So I got my labs done.  And the best part was, that I went ahead and had labs drawn for my other doctors as well.  No sense in getting poked again in a few days right!  After a few days of waiting, I got the call that I was waiting for.  No, not "the call"  But my nurses calling me back with results!  My MELD score is 19.

What does that mean for me?  Not much.  My levels are all pretty much the same.  They have all went up only slightly.  Now its more waiting.  I remember hating this part.  Feeling let down that my score wasn't going up. These days I am feeling even worse than I did back then but I have learned to be thankful for the health that I do have.  For me that means more time with my family and out of hospitals.  I am blessed to have made it this many years as healthy as I am. 5 years I have been fighting and I don't plan on stopping now.

We all know that sooner or later something has to give.  The pain is getting sharper and it lasts longer.  My fatigue is only getting worse.  And my mind is slowly slipping.  Yes, it makes me angry.  Yes, I have days where I just want to give up and get depressed.  Mostly I worry about how its going to affect my family. Eventually the day will come where I can't do the things I have managed to do this far.  I've had more bad days in the past few months that I had all year last year.  My feet swell while I am cooking dinner and I forget what I am doing.  My hands flap and cramp when I play cars with my son.  And I can't type with out taking many breaks.  Not just because of my hands but because my mind just wipes it self clean every few minutes and I have to re read what I am writing about.  I find myself  spending less and less time on the computer and my phone.  Crazy I know!  Even holding a book and trying to focus on what I am reading is exhausting.  I spend every minuet reminding myself where my boys are and what they are doing.  I constantly second guess myself and beat myself up over my mistakes.  But at the end of the day and more so with the start of every morning, I thank God for every day I am given here at home with my family!

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Its been a while...

I have been so busy trying to settle into our new routine that its gotten a little dusty around here.  But I'm back and things are about to change.  I have so much to share, but trying to find the time to sit and write it out is proving hard  to do. Today is an off day and I am planting my butt down and getting a few posts knocked out...hopefully.

How do soccer moms (or any sport parents) get anything done?  Last weekend we had games both Saturday and Sunday.  Practice is Monday and Wednesday from 6-7:30.  We are late dinner eaters, so on practice days we eat super early so that everything can settle before Ant goes running around.  And of course by the time we get home, its past bedtime and he is starving again.  I swear these boys would eat the walls of this house if they could.  Growing boys have big appetites.  My 4 year old polished off 2 apples and a snack pack of cheerios the other day and still ate dinner.  Tell me my boys aren't the only ones who eat like this!

I'm still trying to figure out if its a positive or negative but David's hours finally got cut back and OMG he has been home before bedtime every day last week.  Life is so much easier with him going in a little later and coming home in time to see the boys before they go to bed.   But his hours have been pretty much cut in half.   So there's the negative.  I'm not sure how we will manage, but in his words "We will figure it out!"

Last week a high school friend of mine asked me if I would be willing to Skype with her college class and do a Q&A kind of thing with her students who are currently studying hematology.  I reminded her of how awful I was at doing things like this back in school and she reassured me it wouldn't be so bad.  I'm excited and nervous all in one.  I keep asking myself what could they possible want to know.  I guess I will find out on Thursday!

I was horrible about menu planning this week.  That explains why there was no post yesterday.  I'm keeping it really simple this week with some quick family favorites.

Monday- Spaghetti and Salad
Tuesday- Spanish Rice, Chicken, Beans and Salad!
Wednesday- Tacos using leftovers from Tuesday.
Thursday- Lady and Sons Porkchops, sweet potatoes and corn on the cob
Friday- Its Good Friday, and David is off so I didn't plan anything yet...

And now I'm calling it a night.  Its been a long tiring day and I have a feeling tomorrow is not going to be any different.  Here's to a great Wednesday!  Much love

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Dear Alexander

Dear Alexander,

Four years ago, you were placed in my arms and I was with out a doubt sure that our family was complete.  When you came in to this world, you brought with you so much love, happiness and hope.  I knew you would be amazing the minuet I found out I was pregnant.  I knew that life would never be the same again.  Boy was I right.  I also knew you would be a boy.  I had dreamed of your face with your big brown eyes and your perfect little lips.  You are a dream come true.

If I had to pick one word to describe you, it would have to be Emotional.  You have such a tender heart.  Your feelings get hurt so easily and yet you are so quick to forgive.  You are brave but cautious.  Curious and determined.  You are confident and proud of everything you do. So mischievous and impatient.  Shy one second and then demanding the spotlight.  You are all these and more.  And usually all in one day.

As I look back to the first few years with you, I am overwhelmed with love and happiness.  In such a dark and scary time in my life, I found hope in your eyes and happiness in your sweet little laughs.  A mother is supposed to be the one protecting her children, but you were the one protecting me.  I have said it a million times and I will say it again.  You are my saving grace.

The fours are fun.  I cant wait to see how much you grow this year.  You are so eager to learn new things and explore.  The world is yours little man.  Lets see what we can get ourselves into!  I love you to the moon and back.  You.  My Alexander the Great!

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Last Labs of the Year! (fingers crossed)

I finally went to do my lab work today for my hematologist.  I usually get them done the first week of the month.  But something always came up.  And to make it worse, I checked in on Four Square and it said I hadn't checked in...in 2 months.  So now I am thinking I didn't even go last month.  Oh, my Dr is going to kill me!  Or stick me back on monthly appointments.  Which would well, suck!

I usually get a call the next day if there is any problems.  So fingers crossed, that all is good.  I have my follow up with him next week.  And that's the last appointment of the year.  Praying to end the year on a good note.  Good results.  No surprises. Unless its a present, because I love presents!

How is it almost Christmas anyways?  It was just Halloween!  The weather her in Texas has been bi-polar.  This morning at the bus stop, I was freezing.  Even with jeans and my big comfy hoodie.  This afternoon I was wearing shorts and slippers.  No wonder people get sick around this time.  Their bodies cant keep up with the up and down temperatures!

Enough rambling.  Wishing you all a great rest of the week.  This weekend is going to be a blast.  More about that later!  Much love!

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Results may vary...

Monday was my follow up with the Liver Clini.  And was a pretty easy one, even though I was a nervous wreck.  I think having to go alone was what was the hard part.  But I made it though with almost all good news too.  My liver is working well and getting things done.  All my lab work came back with good results.  My bilirubin and creatinine were only slightly elevated.  And there was no fluid in my abdomen.  YAY!  The Dr left to schedule my appointments then came in with the bad news.  

I love the way he casually says "Oh, I forgot one thing to tell you"  Um...I would have rather had the bad first, but ok.  So.  There is a polyp on my gall bladder that is new.  It is 6mm.  He said that if it grows larger than 1cm, they will have to remove the gallbladder because there is a greater change that of it becoming cancer.  However, I don't have to have another scan for a year.  And I he also said unless I had any problems, I can stick to 6 month appointments for now.  I think each doctor has their own preference on this.  My originally doctor said that I should be kept on 3 months visits.  Its a good thing I know my body pretty well and I think that if something were up, I would notice it.  Off goes the safety blanket of regular appointments.  

Don't get me wrong, I LOVE not having to go back so often.  And my checkbook may love it more.  But I get such a sense of security knowing it wont be long before I go back.  Things change so fast and Im always worried that if I don't go back so often, something will be missed.  And after being so closely watched over the last 4 years, to be given just a little bit of wiggle room is scary yet refreshing.  

And I got homework.  20 mins of walking 3-4 times a week.  And he wants me to build up to 60 mins a day.  I told him that I try, but one day of pushing myself usually leads to two days of pure exhaustion.  He promised if I just push though the first two weeks it will get easier.  My weight has been a problem for a while and I have stayed as active as I could.  Good days and bad.  But this is the first time a Dr has mentioned it.  Crazy right?  So now there is no avoiding it. Doctors orders are the law around here.  

Tuesday I had a dental appointment and was nervous about the oral cancer screening.  My father just passed away in July.  His cancer started in his tongue and jaw.  So its pretty obvious why I was nervous.  But I got the all clear.  Nothing!  Praise the Lord! 

Next up is the hematologist who I have no wiggle room on.  Labs every month.  Visits every 3 months.  Somethings never change and that is ok by my.  And sometimes they have to.  That is ok too.  heres to a new chapter in this crazy book I call life!

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Hello 2nd Grade!

Of all the emotions I am feeling over this day, this school year, I'm going to go with Anthony and choose Confident.  This school year is going to be one to remember.  And I hope I'm not jinxing myself now that I typed it.   I can't wait to see all the fun and adventure it will bring.

Ant had a hard time falling asleep last night.  And when I got up this morning, he was camping out on my floor...wide awake...at 5:30am!  It worked out well though.  We had lots of time to go over the class and school rules.  He had time to get all his sillies out.  And to have some breakfast, get dressed, washed up and still some time to watch some cartoons.  And I had time to get dressed and finish packing up his bag.  The morning was smooth and the cherry on top was David driving us this morning.  Even Alex was up to come along.


The day flew by though.  I managed to get some photos uploaded and saved.  A few loads of laundry done. Read some books with Alex.  Played some Tick Tac Toe, he won.  And had a nice quiet lunch just the two of us.  And now its time to get ready and head out to the bus stop to pick Anthony up.  Lets pray we don't repeat last years first day.  The one where he wasn't on the bus!!!  Fingers crossed...

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Feeling...

Why is it that the one time I am really looking forward to Clinic they cancel my appointment.  I called to reschedule but I couldn't get in for another month.  I guess there is a new Dr and they dropped some of the appointments to make the day run smoother.  Um, not to be dramatic and all, but what about me!  That doesn't make my life any easier.

One of the few reasons I was looking forward to it was because David was going to go with me.  He only gets to go once a year, and the last time he went, the nurse said she was relieved to see him.  Apparently because he hadn't been coming with me, they were worried we had divorced.  Nope, he was just busting butt to pay my bills!  I think he was a little hurt by the comment.  Because he not only took 1 day off he took 3. And he most likely won't be able to get off next month. 

One of my biggest problems I have been having is weakness and pins and needles in my hands.  I can't even count how many things I have dropped because I just couldn't hold on tight enough.  I have also avoided lots of tying because my hands cramp.  (I've stopped twice so far this post).  And my knees and back.  I feel like I am 90 some days.  

I have lost my appetite, but not any weight.  I eat when I know I'm supposed to but some days I just forget, because I don't think about it.  And I've been nauseous all day, so that isn't helping any!  The day before yesterday I was dry heaving so much that I am pretty sure I pulled a muscle in my back. Yesterday I reminded myself to eat and I had a grilled cheese.  And that stayed down.  But then David and I went out to eat with some co-workers of his.  And I feel bad because my 25$ steak didn't even stay down for 25 minuets.  TMI!?  I'm so glad I am a quiet thrower upper.  That's a word right?

Just more stuff to go down in my little notebook.  I know there is something else, but now I cant remember what it was.  I feel sorry for the doctor I will unload this all on.  OK not really.  After all that is what they get paid the big bucks for right?  Hopefully when I do go in, I will get my favorite Dr!  While he admits that some of the other doctors have more experience than he does, he is the only one who will stay seated until I have asked him every question in my little purple journal.  And that's what makes me feel better!

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Accepting me for me

Its amazing what a few days of just thinking can do for you.  I have cut myself off a bit this week.  Mostly because I've been sick and this cold just kicked my butt, but also because I was bursting at the seams with emotions.

I kept going over in my head trying to figure out what it was that has been eating away at me.  I've gone though every emotion known to man and probably a few I just made up.  Highs and lows and every in between.  I thought way back when I though I was to broken to let anyone in.  I was an empty shell for years.  Everything I am going though now is nothing compared to the hell of those years.  

I thought of the highlights.  David.  My boys.  Being surrounded by a happiness I never felt worthy of.  Sitting in the church as we baptized the boys and promising to always do right by them. At the time I was in denial of even being sick. My life was falling apart around me, but there in the church, my heart was at peace.  A first for me.  I keep saying I want to go back, but honestly part of me still feels...unworthy? I don't know.  I need to change that.  Id like to feel that peace again.

I took a good long look at how far I've come.   I have accepted my past.  Whats done is done.  I've accepted that I am sick.  That doesn't make it any easier, but I have no real control over it now.  I am married to a wonderful man.  Who even though he is a man of very little words, his voice still gives me butterflies.  I am a mother to two very trying, headstrong and absolutely perfect in their own way boys. They are my everything.  I have friends and family who have been supportive and loving of me always.  Some old some new and some I've never even met in person.

For a second there I though I was having some sort of breakdown.  I've been depressed before, it wasn't that.  Then I realized, I was just sad.  Sad that things aren't quite what we imagined them to be. I feel like there is so much that could be changed to make things better.  But that's life.  I don't want my life handed to me on a silver platter.  I don't want people to feel sorry for me.  I don't want to be stuck at home.  I don't wan to be sick anymore.  When I am better, I will be able to get a job and contribute.  Take some of the responsibility off Davids shoulders.  I will be able to go to all the wonderful events and parties that I've had to miss out on.  I will be able to get up and get out so much more.  Yes, I am just sad.  And I'm allowed to be.

But this is my life, for now. And I just have to accept that.  There will be good days and there will be bad.  But I am here and that in itself if a blessing.

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Liver Clinic Update

#1 Liver Transplant Program in the USA!!!

Today was my follow up appointment at the liver clinic.  Its been 5 months.  The appointment itself wasn't all that helpful.  It was quick.  The Dr I saw today was nice, don't get me wrong, but I miss my old Dr.  who never seems to be in anymore.  And I'm just not very comfortable with any other the others.  I feel bad saying that.  But its how I feel.

I spent more time with the RN who did my vitals and entered my info.  My new medication to be added was Vitamin D. We added my dizzy spells and swelling legs to the chart.  I can always tell when somethings up with theses guys.  He asks me, "Hey, what does your blood pressure usually run?"  I told him its been so low at times they cant even find a pulse in my wrist.  No Joke.  Today it wasn't so bad. 98/60.  But he did have a hard time finding my pulse.  He said it was so faint.  No one has ever made a big deal about it, so I never asked.

The Dr came in did his thing.  Tapping on my belly, checking my ankles for swelling.  The whole deep breath in thing.  The only thing he really brought up was that I needed to have another endoscopy done to check for varices.  Not big news to me since it was written down in my questions to ask already.  He said he was going to schedule it but never got back to me on that.

I asked him why I didn't have a shunt and he says "Well because your Vena Cava is clotted too."  He explained that it wouldn't be helpful to reestablish blood flow in to a vein that isn't open anyways.  Then he mentioned a shunt straight from the liver to the heart and told me that he has done two of them.  One went very well and one went VERY BAD.  No thank you.

I asked him about a liver biopsy.  I had it written down in my notes to expect one every 2 or 3 years.  And he said that at this point it wouldn't really matter what they found because they already know they don't want to do anything until something happens and I have complications.  Not anything new but still very disappointing to hear.

So with that, I was on my way.  Getting my lab work done.  I will call tomorrow and get my MELD score.  On the way home my arm sprung a leak and I bled through my bandage on to my nice only worn twice shirt.  Then though a few napkins too before stopping.  My guess is my IRN is high.  Ill find out tomorrow when I call.

Until then!  That's all I got.  Much love to you all!  Thank You for your constant prayers and well wishes.  They mean the world to me.

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Whats up with me?

I was coming home from the lab this morning after having my blood work done and had the perfect idea for todays "Medical" post.  Got home, started chores and now I haven no idea what so ever what it was.  So I will just tell you all about some things going on around here.

Today I had blood work.  My Dr called me a few hours ago to let me know that my INR was a 2.6.  So no change in doses and I don't have to go back for a whole month!  Heck yeah!  I hate when my blood goes crazy and I'm back on weekly draws.  My veins don't even have time to heal!  They are getting ready for a vacation!

Tomorrow I have blood work for the transplant team.  Plus an MRI.  So that means, one arm is going to get stuck twice.  And Ill probably bruise but not biggie.  I get scans done before every liver clinic appointment.  And sometimes from multiple doctors.  So I'm looking at over 15 scans in the last 3 years.  Don't even get me counting ultrasounds because I had over 30 just while I was pregnant.  At one point I was keeping track but lost count!

I don't have clinic until next month, but by doing my scans and labs early, we can go over the results when I get there.  God I hope MY doctor is there.  I have a few questions that I know he will take the time to answer unlike the other Drs who seem to just rush though the appointment.  I hate that.

I'm still working on my goals for the month.  Gotta step in up (literally) seeing as its the 23 and Ive only done 14 out of 30 miles.  And I'm working on the new food part.  My book will be here tomorrow.  I love Janet Evanovich. I know I will have no problem reading the whole book in a day or 2!  So if I go missing, there will be a 80% chance I will be hiding somewhere with my face buried in a book!

What are some of your goals this month/year?  Have you stuck to them so far?  Wishing you all a wonderful week!

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Update for today

Well both boys are finally sleeping, meds are down and have stayed down, and I'm about ready to crash out myself.  As soon as the eggs are done boiling for tomorrows lunch.  What an exciting night eh?

I had my appointment with my Hematologist today.  It was my first visit in his new office.  I LOVE this Dr.  He is amazing.  And even more amazing is he is hoping to have a coumadin clinic open soon.  For those who are reading with a funny face, the blood thinner I am on is called Coumadin.  Well technically I am on the generic, Warfarin, but same thing.  Anyways this has to be monitored very closely, so that means monthly blood draws, which when my numbers are bouncing around can lead to weekly blood draws and you get the picture.   My poor veins are tired.  But with a Coumadin Clinic, I could walk in, get a quick and almost painless finger stick and even better have my results right there!  So much better than waiting on the labs.  So thats good news!  Bad news would be that my INR is 3.6 and thats a little high. We are going to recheck in a week and adjust my meds from there.  I want to be between 2 and 3.  We will see what a week does.

My blood pressure was 98/62.  Low but nothing that concerned him.  So I'm going to just go with it for now.  The nurse said I must be really relaxed!  I laughed and told her that I felt half dead.  I was so tired, I fell asleep in the exam room.  Good think the Dr was running a little late, because I got a quick 10 min power nap.  Didn't help much.  I still came home and was in bed till almost 7 I think.

This fatigue is killing me. I'm trying so hard to push though it but its so hard these days.  I wonder if something else is off somewhere.  I will find out in a month when I go back for more blood work at the Liver Clinic.  And I have my MRI that same day.  I think I'm going on my 14th MRI in the last 4 years.  Its to the point where I fall asleep in there!  And I actually love getting my IV flushed.  Its refreshing.

 I'm so glad its almost the weekend.  Looking forward to some park time with the family if the weather agrees.  And hopefully my body agrees too.  Here's to hope!  Have a wonderful weekend!

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Wisdom? More like pain in the...

***Warning. I may or may not be whining this whole update***

I hate whining, but seriously!  Today I called my hematologist because I am going to be having my wisdom teeth taken out.  The reason I have to have the procedure cleared though him is because he is the keeper of my blood and things like my gums being cut open need to given the go ahead by him.  

When I had the mass taken out of my neck, my liver biopsy and the countless endoscopies I have had all I've had to do was stop taking my blood thinners for a few days and then resume afterwards.  Silly me,  though it would be that simple this time around.  NOT!  As soon as I heard the words "your going to have to go back" I knew what he was going to say...Lovenox. Yes, I was right. The dreaded twice daily injection.  

Lovenox and I go way back.  This is the result of my first injection way back in 2008 when I was just diagnosed.  Its crazy to go back and read entries from back then.  Looks like I will have to go back on the shots for a full week before I go in to do my wisdom teeth.  And then can go back to taking my pills afterwards.  That is as long as everything goes according to the plan.  I have to call my Transplant nurse tomorrow and make sure my liver doctors are OK with it as well.  Thankfully I have been very stable and haven't had any infections.  But there's always a risk I could get one afterwards and I've been told that when your liver isn't working properly infections spread like wildfire.  So, who knows what the clinic will add to this.  I guess we wait and see.  But I guess I've added band aids and more alcohol wipes to my grocery list.  And I need to figure out how I am going to pay for the Lovenox.  Hopefully its not still the couple hundreds dollars it was last time.  Either way, the though of doing this again makes my legs hurt.  Maybe this time Ill inject in my stomach?  (Which is where they wanted me to do it last time while I was insanely pregnant).  Doesn't sound any better does it?  Maybe not.  Anyone want to take a shot at me?

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Liver Clinic Update

Is it wierd that I am freaking out because I dont have to go back for 5 months?  The Dr who I saw was not my favorite regular Dr.  So things were a bit different.  It seems like more and more the nurses are doing what doctors used to.  First I saw a nurse who took my vitals.  BP105/50.  Temp 99.5.  Weight....yeah not going there.  Answered a hundred and one questions.  And then came a Dr who I had never seen before.  Who had me explain my answers to the questions asked by the nurse.  Then came the dreaded exam.  He looked at my chest for any spider veins.  Checked my hands for swelling and flapping. My eyes for any yellowing.  And then my belly.  Seriously, my liver and spleen are so large and swollen that anywhere you push its going to be tender. Yes here and yes there. I thought I was going to break my toes from curling them so bad.  He said he could feel that my spleen was quite big as well.  Fun times I tell you.  Then it was off for blood work.  Only 6 vials this time, thank God!

By the time we got home, I took some med and went to bed.  Im truly grateful to have my family here.  Uncle Jeff was in charge of homework and reading.  Aunty Bug picked the boys up and fed them and gave them a bath.  Bubu supervised!  And I woke up just in time to say goodnight to Ant. Talk about a quick day.  Of course I was up till 3am and up at 6 but I am feel well rested so no complaints here!

So unless anything changes, I think besides monthly blood work and a hematologist appointment, I'm done with Drs till the end of the year.  Oh and a trip to my primary for a flu shot as soon as I schedule that.  But all easy stuff. And with family here and next months Donate Life walk, then the holidays, the rest of the year is going to fly bye.  Which reminds me! I have so many fun holiday activities planned, thanks to Pinterest, my new love.  I should share them with you all.  Wishing you all a fabulous rest of the week!

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And then there is my liver

I had my 3 month follow up with the liver clinic Wednesday.  And things are pretty much the same.  Except this time David got to come with me and go in to work late.  We even got to sit down and have lunch together afterwards.  It been a while since I got to see him so much during the day.  But I love him for working so hard for us.

So like I said things are pretty much the same. My liver is not completely failing  but isn't working 100%.  My kidneys are working great, so thats great news.  In the words of my Dr.  "You are a perfectly healthy 28 year old woman, except for your liver." My body is fighting to stay strong.  My heart is doing the same.  But how long can you put it off.  Eventually my liver will get worse and stop working.  I will turn yellow.  Or maybe my kidneys will "scream" as the Dr calls it. Then what?  Then I just keep waiting.  To get sicker, and sicker.  It will hurt more, Ill be more tired and more out of breath.  Gee I cant wait.

I asked about the 3 nodules on my liver and he said that they are still there, but not something the MRI Dr felt was an issue right now.  Thank You Jesus!  I asked about my tenderness, as he was pushing on my stomach....yeah not fun.  But to be expected when your liver is congested with blood.  I asked him my liver was like a water balloon just waiting to explode.  Its not.  But any trauma to my abdomen could very well rupture either my liver or spleen, which is congested with blood too.  We also got to talking about my Encephalopathy.  No Driving,  be alert of your body and its surroundings.  The usual.  He also took the time to reassure David and I that it was ok to get angry and frustrated.  But to get it out and then apologize!  He said he would consent to my putting my hand through the drywall, but since I'm on blood thinners we had better come up with something else!

All in all I have been feeling ok and that's enough for me right now.  I have noticed a few changes which are all expected.  Loss of appetite, shortness of breath, fatigue.  Im fighting it all, but its getting harder.  I've set some small exercise and diet goals to see if they will help.  I'm hoping I can just keep pushing though it all.  But knowing that in time, I just wont be able to do it, is killing me.  I've noticed the Encephalopathy sneaking its way in my head.  I cant remember songs that I have sang my whole life.  And sometimes even with the music I cant sing along.  Anthony will tell anyone that I am always forgetting things.  As long as I don't forget him I think he will understand. That will never happen though!!

Its late and I'm loopy, so hopefully this makes sense.  Much love!

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A week in

OK I promise this is the last "oh I love my new house" post.  We have survived a whole week here now and everyone is accounted for and the house is still standing.  There is still a lot of stuff over at the other place, but we haven't missed anything.  I'm so close to just donating whatever is left!  The boys have 2 toy boxes full of toys they haven't even noticed aren't here.  Or ones that there is just no spot for here.  David has a ton of old clothes to get rid of and I have bins of maternity clothes that I will not be needing anymore.  Then There are the 2 extra strollers, and the tons of outdoor things they have.  Ugh.  I get tired just thinking about it all!

The bad luck did strike pretty bad this month.  We bought brand new appliances even though we were advised by everyone not to.  But the reason we did.  Everything breaks on us.  The washer has already broken twice and we just got a replacement for our damaged TV console today.  The MRI machine shut down half way though my last round of scans.  And add no computer for me and that should tell you, my luck...sucks!  Plus my blood is all out of whack again this month.  But I keep telling myself that it could be so much worse.  To bad I didn't come with  a lifetime warranty.  My overall health is still stable, so at least I got that going for me!

I still feel pretty bummed about missing out on Donate Life Month, but I know I can make up for it.  My computer died on me, so now I'm stuck with Davids laptop.  But, it works.  So I'm going to get a few things off my shoulders this week.  Mostly liver things.  Maybe a little house related ;-)  Maybe. But for now I need to take my butt to bed.  Tomorrow is Speech.  And Alex will be up early just waiting for his Mrs. Debbie to show up and play. 

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Getting Settled

I know its been a while since anyone has heard from me.  There just seems like no time to write.  No time to tweet or play on Facebook.  My life has been taken over by moving and cleaning and unpacking and organizing.  Ugh.  Yesterday I took a half day.  Spent the morning, playing and then freaked out that I didnt do anything that night.  Like when I say im not tired only to wake up wanting more sleep.  Why do I torture myself!

But things are slowly looking up.  The house is coming together.  We still have a boatload of things at the other house, but we are getting there.  The boys are enjoying the new place.  Alex has been sleeping like crazy and Anthony seems to be less frustrated.  Just seeing their smiles and hearing them laugh makes me feel better.  This was the right choice for our family! 

I am a little bummed that I didnt get a chance to be on here much this month.  After all it is Donate Life month and there are so information to share with you.  There is always more to learn about and more to share.  I cant belive its already the 27th!

Hopefully things will slow down around here and I will have a little more time on here.  Ofcourse my computer broke so Im stuck using the laptop.  Which means no photoshop....boring!  I have a ton of pics to share with you all too!  We have a Swallows nest in our backyard with 5 day old chicks in it!  Ugliest Cutest things ever!

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Im back

I haven’t written in a while. Things have been more than the usual crazy. So many things going on. So many prayers sent. None answered. But I keep telling myself to have faith. That’s all I can do now. I don’t know all the details, but I know my family needs prayers.

As hard as this week will be, I’m ready for it. I used up all my excuses and pity last week. This week I’m putting my happy face back on. You know, the one that hides the pain and sadness so well. Should be interesting to see what the therapist has to say this week. Speaking of doctors, this week I see my hematologist too. Next week I have my Liver Clinic appt. And I really home my regular Dr. is there.

I also fell off the exercise train. Fell off and run over by is more like it. But it’s a new week and I’m jumping back on. I did stick to my cooking at home goal. Yay me. It felt good to know what I was making each day. I watched my serving sized and didn’t have any second servings. I did get a little chocolate happy which is quite odd because Im not a big chocolate person. We did grocery shopping today and I am set for the week. Lots of veggies and only a few processed things. I’m juts not ready to make my own hamburger buns yet.
I don’t know what I am making each day, because Ill be cooking around my Drs appointments. But here's what we are having.


Chicken strips and fries. By making these from scratch I will be cutting out about 300mg of sodium. The calorie count does go down but only by a little.

Sloppy Joes. This is another thing I started making at home. The boys love this stuff but there is no more Manwich here. Again the calories don’t go down a whole bunch, but the sodium about 300mg again! The recipe I have calls for ketchup and tomato paste, so I will use the no sodium kinds.

Chicken Roll ups are a fajita of sorts. Boneless Skinless thighs with bell peppers, seasoned and wrapped in a tortilla. Good stuff. I skip the tortilla because if I don’t then I want cheese on it and that plus the tortilla is a little to much sodium and calories for me.

Pork Tenderloin. Yes I know it was on my menu last week, but we ended up with leftovers one night, so I have carried this over to this week. Not sure if I will stick with the same recipe or not, but yeah.


I love short weeks. Especially when both my boys are sick. Stupid weather. Anthony got soaked when they were leaving Monster Jam last weekend and my this morning, both boys are coughing and congested. Should make for a fun week. I guess I better get to cooking. I started this post last night, fell asleep, wrote a little more this morning, went to get Ant from school, and now I’m tired of writing. 

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So now Im a dog?

"When you feel dog tired at night, it may be because you've growled all day long. ~Author Unknown"

Last week was the another rough week.  First the boys got sick. Then my MIL.  Then Friday, David actually had to leave work and come home.  He was in bed for 24hrs.  And when he wasn't in bed, hes was puking his brains out.  I was pretty sure we would make a trip to the ER in the middle of the night one day or another, but thankfully, everyone survived. Looks like there is a 24hr bug going around the house.   The saddest thing of all was the night the baby was sick.  First he came to me and demanded to go into the bathroom.  I though he wanted to get into the cabinets, so I redirected him to his pile of toys.  He kept insisting on going in there.  Eventually he projectile vomited on me.  So I go running into the bathroom to get a towel and when I turned around, my baby was holding on to the toilet for dear life.  I realized that hes paying attention more than I thought.  Hes seen me do it countless times.  All night he kept running to the toilet, vomiting and would say goodbye and flush.  I felt proud at how grown he is but guilty that he has seen so much at such a young age.  If Anthony were to see someone shooting up, he would probably ask them if they used an alcohol swab to clean the area first.  Or if they wanted a band aid.  He used to insist on sitting with me when I did my own Lovenox injections. 

So back to the quote...

This whole week I have got pretty much no sleep.  And God was I a dog.  I'm sure there is another word for it though. ;)  I was snappy and angry.  Every little thing would set me off.  I knew I was being so out of order.  Then Saturday night Anthony brings me his little sketch pad and says" Look momma, this is you with an angry face!  And this is me with a sad face."  I went straight to the bathroom and cried my eyes out.  Who am I?  I have always been the calm and collected one and for the past few weeks I have even been getting on my own nerves. 

This morning I woke up to a text that read "Hope you are sleeping well my love."  It was 9:30 in the morning and I went back to bed and slept until 11am.  Just what I needed to clear my mind and set me straight.  Today was a wonderful day.  Took FIL out to lunch for his Birthday.  I had steak and lobster.  Of course because In didn't take my meds this morning, halfway through grocery shopping, I was only half lucid.  I had to focus so hard just to get though it.  But I made it though the whole day with out raising my voice or arguing with anyone!  YAY go me.  And now I'm just excited to get on with the new week!  I am going to be trying my best to keep my cool and go with the flow.  I have always prided myself on being the best wife and mother that I can and the last few week I have failed. 

"We plant seeds that will flower as results in our lives, so best to remove the weeds of anger, avarice, envy and doubt... ~Dorothy Day"

**Warning-If this doesn't make any sense its because of the damn steak.  Red meat = H.E episodes.  But it was soooo good!  All done with red meat for the week though! **

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