Happiness is ______ {2014-W7} #happinessis

If I was being 100% honest, I would say that at first I thought I was going to struggle with this post.  I have been beyond stressed, overwhelmed, bitter and flat out uh happy.  Its been a rough couple of days and I was thinking I would skip this week because I couldn't thing of happy stuff.  Then I scrolled though my photos and this is what I found. Happiness. 

Sometimes I get so annoyed when I have to have labs drawn.  Monthly, sometimes weekly.  I have to bother someone to take me there and then wait.  I'm so over it.  Like four years ago.  But Happiness is when the doc calls and says my numbers are perfect.

Happiness is knowing that even though there are days I would rock the heck out of a wheelchair, I am well enough to walk. Even if its only for short distances.  My energy has been hard to find these days, but so far its been pretty manageable.  

Happiness is fresh air and the smell of soccer :)  And also seeing this little guy boot the ball like a champ!

Happiness is a beautiful start to a day that was less than.  I don't know how many times I tell myself "at least the day started out beautiful!" 

Happiness is hospital cafeteria food. So often I worry that I scar the boys with so many trips to the hospital.  But they love it there.  It makes me sad that its such a normal thing for them.  But I am glad they are understanding and that they don't mind going.  Especially if Grandmas taking them to get some food.  

Happiness is trying a new place.  Even if it was awful.  I will just stick to my sausage and bean tacos.  But we actually tried something different for a change!

Happiness is having boys that love food I ate growing up.  So many kids turn up their noses to things like Musubi (rice and spam wrapped in seaweed), smoked oysters and octopus.  Its not very often we make them, but when we do, there are smiles all around!

Happiness is the love these two have for each other.  Chico is 13 years old. Hes feisty, yappy, grumpy yet full of love.  He hasn't been feeling so great lately and Poncho knows just what he needs.  Some good old cuddling!

Sometimes I just have to remind myself that there is so much more to be happy about than for me to fuss about. Yes sometimes I want to thrown my hands up and quit. I scream and cry and feel sorry for myself.  But even on the worst days, there is something to smile about.  Something that makes me happy, even if just for a minute.  Stop by Crazy Adventures in Parenting and share in the happiness!  

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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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Rolling with the punches!

You know what is awesome?  Its Thursday!  And even though it has been a really rough week, Im going to 

roll with it.  

Sunday I actually went for a run before noon!  And Monday I made 3 miles, pain free!  That was the highlight of my week so far.  I may have been slow, but I got there and I didn't feel like my insides were beat up afterwards!  

Tuesdays I had a follow up with my hematologists.  My labs have been all over the place but yesterdays results are in and my INR is on its way back down.  She also put in an order for a home testing kit for me.  If it all goes through, my veins are going to be very happy.  I can handle a weekly finger prick!  One less needle and bruise, Ill take it!

Yesterday was bad.  My meds sucked all the life out of me.  And I could not hydrate myself enough.  I didn't keep any of my food down.  But it made me angry and managed to clear up a few piles of paperwork and mail that had piled up on my desk.  And God bless left overs.  Man am I glad I made that big ole lasagna Tuesday night.  No cooking meant I could get some rest. David ran out and got me some Gatorade after dinner which seems to be helping!

And now its Thursday.  I crawled back in bed after dropping Ant off at the bus stop and sending David off to work. My sister was up early, so I crashed.  Didn't wake up till noon.  I had a sandwich for lunch and its staying down! Knock on wood.  

I had planned on running 6 days this week, but since I'm rolling with it, I've knocked it down to 5 days and yes I know that means I will lace up for the next 3 days.  I got this.  Right?  

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Red flags and alarms.

Lots of little red flags going up over the past few days.  My balance is off.  Nosebleeds.  Head and muscle aches.  Fatigue. Loss of appetite. Last week was rough.  Saturday was better, and Sunday I felt amazing.  But come Monday, I was nervous.  I had to literally roll out of bed.  Managed to get lunch pack and Anthony to the bus stop on time.  Luckily David was going in late so I was able to rest until noonish.  But by the time he left at 2 I wanted to beg him to stay.  I have always been so good at sucking it up.  Yesterday I just couldn't.  

Luckily for me my boys are amazing when it comes to mom having a bad day.  Alexander cuddled in bed with me until my alarm went off to go to the bus stop.  So off we went, still in our pajamas.  You couldn't have paid me to get out of my sweats yesterday.  Got home just in time to bleed out of my face and get back it bed.  The boys hung out with me for a while.  I got a foot rub from one and the other made a fan to fan me with.  They really know how to treat a woman!  After a good 30 minuet rest until another alarm reminded me that I had to get up to make dinner.  I made some dessert.  The boys played for a while until another alarm rang out.  "Meds!"  The boys call out to remind me to take them.  This also meant bath time.  Another alarm at 7:45 sends Anthony to bed. Sweet Dreams!  Can you believe they went a whole day with NO fighting.  Thank the Lord for that! Alexander and I crawled back into bed at 10.  He passed out and I stayed up for a few more hours.  Big mistake.

This morning, I heard my alarm go off.  I hit snooze and closed my eyes for a little longer.  Then I got up and went to the bathroom.  I sat on the side of the tub and looked down at my phone.  6:39.  WHAT?  Then the alarm to go to the bus stop went off.  A ran to Anthonys room.  He was snoring away!  Talk about a rude awakening.  We rush but there was no way we were going to make it.  So we just slowed down.  Today he has a big reading test, so I'm hoping that the extra 30 mins of sleep will help.  The walk to school sure woke him up.  He was full of questions this morning though.  We walked and talked about why I didn't feel good.  Poor kid apologized for sleeping in and me having to walk him to school.  I explained that I should have been up earlier so he was not at all to blame.  It actually ended up being a great conversation and hopefully he has a better understanding of my being sick but not looking sick.  Ill save the deets for another post though.  It deserves it!  

Now to finish my grocery list and see who can take me shopping.  Just another reminder that I am unable to do things for myself.  But instead of feeling sorry for myself, I am going remind myself of how blessed I am to have people here who are willing to help.  You have to look on the bright side.  Otherwise life will swallow you up!  Here is to hoping the week only gets better!  Much love!

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No Social Media?? #HAWMC

Day 23 (April 23) – Technology

Write about how your life would change if there was no social media. 

Today’s post was recommended by Christina of www.stickwithitsugar.com

No Social Media??  Oh boy, that would be a tough one for me.  For me, someone who is almost home bound, some days social media is my only link to the outside world.  When I started this blog I had no idea how many friends and how much support would come from places like twitter and Facebook   And now if you take away things like Instagram and Pinterest  Id be left to my own imagination.  And while that is perfectly fine, I really would miss it.

I have tried very hard to stay in touch with all my old friends and new ones too.  But in this world, we no longer send letters and talk on the phone.  We post on walls and comment on their photos.  We don't sent pictures or even email the way we used to.  Its almost all done on one or more social media sites.

Last week, I questioned the sites of my Lovenox injections.  My Dr was OK with where I planned to do them, but I was curious about what others who have done them thought.  So I turned to a Facebook page for other patients taking blood thinners and they all assured me that my stomach was the way to go.  They were right.  It was hard the first time, but its my new place!  I often wonder things like am I the only one who gets headaches when my INR is high or the only one experiencing hair loss even thought the Drs say it is not a side effect of my meds.   I know have an outlet to bounce these questions off of and talk to others who are dealing with the same issues.  No, social media is not better than asking your Dr.  But as much as they can be an expert on a condition, if they have not lived in your shoes, they don't understand it 100%.

And without this blog I would have still been all alone in my fight against liver disease and Budd Chiari Syndrome.  I started out feeling like I was the only one in the world with it.  Now I can say that thanks to social media, I am no longer alone.  None of us are.  

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Acrostic Fun

Day 13 (April 13) 

Write a health acrostic for your condition, hashtag, or username! 

B. bilirubin
U. upper right quadrant
D. damage
D. doctors

C. cirrhosis
H. hepatic encephalopathy
A. ascites
I. inferior vena cava
R. rejection
I. inr

S. spleen
Y. yellow
N. nurses
D.diuretic
R. rare
O. organ donors
M. mri
E. esophageal varices

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Intro to Budd Chiari Syndrome #HAWMC

I was diagnosed with Budd Chiari Syndrome and Prothrombin Gene Mutation (Factor II) in 2008.  BCS is a liver disease where blood clots form in the hepatic veins blocking the flow of blood from the liver to the heart.  1 in 100,000.  When the Budd Chiari was found so was my blood disorder that most likely caused the clots.

As the blood flow backs up into my liver and spleen it has become enlarged and causes damage.  I have been very lucky to be able to have come this far and still be stable.  No shunts as of yet.  I have equal good and bad days.  I have managed to avoid most of the symptoms and for that I am very blessed.  My greatest struggle is the fatigue.  With two young boys, there isn't a lot of time to be tired, so I have been doing my best to push myself when I need to and allow myself to rest as well.

I have MRIs done on a regular basis to check the progression of my liver as well as a yearly endoscopy.  I visit my hematologist every two months and have labs drawn depending on my results.  If all is good, I only have to go in once a month.  If my numbers are off, it becomes a weekly thing.  I am happy to report that I only see the Transplant team every 6 months now. And I have labs drawn to update my MELD score done every so often.  That too depends on my results.  The higher my score the more often I get my labs checked.

5 Things to know about Budd Chiari...

1. It is not something brought on my consuming alcohol.
2. There are more than 117,679 people waiting for organs.
3. The only "cure" for my Budd Chiari Syndrome is a complete liver transplant.
4. I will be on blood thinning medication for the rest of my life.
5. My boys have a 50% chance of inheriting my blood disorder.

Another thing I wanted to share was that April is Donate Life month!  A month to share information and create awareness of something that saves so many lives.  Maybe it has changed your life or the life of someone you love.  Many of my friends are registered organ donors, but there are a few who are not. Are you an organ donor?  How did you make the decision to be a donor?  And how has donation affected your life?  I love hearing others stories, so please feel free to share them with me!

Much love and happy Tuesday!

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My first "live" Q&A!

I always tell myself that each month I have to step out of my comfort zone at least once.  Do something different and new.  Something that gets my blood pumping.  That's always a good thing right?  So when my friend Cody asked me to speak to her class, I agreed.  Let me just say, nervous doesn't even cover it.  Cody and I went to school together.  She looks exactly the same too!  Just for fun, here we are.  Class of 2000!!

I sat here for 30 minuets trying to pump myself up and calm my nerves.  It was so much easier having a familiar face there when the video started.  I may or may not have laughed way to much, sorry guys, I'm a nervous laugh-er.  Its laugh or cry for me.  And I wasn't about to cry.  Thankfully there was not as many people as I was thinking there would be and I actually had a lot of fun. I hope it helped them.  I know it helped me.  Someday I want to be able to stand on a stage and tell my whole story with out feeling sick to my stomach.  I can write it all out here but once there are people looking back at me, my palms start sweating.  They had some really good questions though.  And I answered the best I can.  

It also reminded me that I started this blog to share more about my life and what its like living on the transplant list.  I've been horrible at that.  But I'm refocused and ready to roll.  Next month is The Health Activist Writer’s Month Challenge.  So I have already started my 30 posts for the month.  Plus a few other fun things, so I will be hanging out here more often.

I wanted to take some pictures while I was talking, but I also didn't wan to look crazy.  If anyone on the other side got a picture of me I'll trade you for a Hope for Kim Bracelet :)  My sister got a shot of me though.  Thanks Bug.  And a big Thanks to Cody and the class for having me and for all the great questions. If you are reading this and think of any more, feel free to ask!

I hope everyone has had a great week so far, its sprinkling and gloomy outside. But its better than the cold that blew through the past few days.

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Happiness is ______ {Week 10}

I'm linking up with Lisa from Crazy Adventures in Parenting and sharing what Happiness is to me.  Stop by and see what is making others happy and join the fun!

More words than pictures this week.  But that is because most of the happiness is in my heart.  If I could take a photo of it all I would.  I would love to share this all with you.  Hopefully my words will be enough.  So what is happiness?

Happiness is having someone think of you out of the blue.  It is words of encouragement from old teachers.  And letters from childhood friends.  Happiness is someone reaching out and thinking of us when they needed an extra player for their soccer team.  And I am even happier that there is a scholarship program that allows us to play for free.  I don't know if they know just how much of a blessing this is for us.  Happiness is having someone tell you that for their one year cancer remission party they have asked for donations to my transplant fun instead of presents.  I know such giving and thoughtful people.

Happiness if being married to a man who can find you in the darkest of hours and bring you back with a smile.  Over the last month the guilt over not being able to work and do things that other moms can do has been wearing on my heart.  Bills are piling up and David has been busting his butt at work.  But it seems there is never enough money.  Last week our roof was damaged from a wind storm that blew though.  Monday night the roof we were quoted $400 to fix it.  That was my breaking point and by the end of the night I was doing the ugly cry.  David sat next to me on the couch and promised that everything would be OK   Happiness is having someone who loves you regardless of all your drama.  Though tears and anger.  Who can see when something is wrong no matter how hard you try to hide it.  Happiness is knowing he loves me for me.  The good, the bad and the ugly.

Happiness is seeing my baby play soccer for the first time.  Hes so tiny out there but is working really hard.  I have been having so much fun practicing with him.  He is up every morning and ready to go.

Happiness is the both of us getting back good lab results.  A few weeks ago when David was sick his labs revealed high liver enzymes but the recheck was just find!  Thank God!  My INR was at 3.1 and I don't have to go back to two weeks.  YAY!

And this little man was beyond happy to get his soccer uniform. Even better was having our favorite # on the back! Go #28!

 

Despite all the stress and tears this week brought on, I'm sitting here smiling.  Through it all, I know that I am blessed.  Surrounded by love.  And happy!

Wishing you all a little happiness this week!  Much love!

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What is a MELD score?

Bloodwork for the Liver Clinic

If you have been following for a while you have heard me talk a bit about my MELD score.  And a lot of people ask " what is a MELD score?"  So I figured I will explain what it is, how its found and how if plays in to my life of the transplant list.

MELD scores from 6 - 40 and are used to measure the urgency of a transplant.  So the higher the number the closer you are to transplant.  The score is calculated by taking a look at three test results.  Bilirubin, Creatinine and INR.

Bilirubin is yellow pigment found in bile that is made by our livers and stored in our gall bladders.  As you liver fails the bilirubin is not properly disposed of and that is when jaundice sets in.  Causing the yellowing of the skin and eyes. A normal bilirubin level is usually less that 1mg/dL.  Last time I had it checked mine was a 1.4

Creatinine is chemical that is the kidney usually filters out of our blood.  If the kidney is not working properly, creatinine will build up in your blood. By testing the amount the doctors are able to measure how well, or not, our kidneys are functioning. Just like the bilirubin, creatinine is usually less that 1mg/dL.  My last labs show me at 0.72. No complaints there.

INR is the third.  This measures our livers ability to make blood clotting factors.  A higher number means that the liver is taking more time to coagulate or form blood clots.  In my case, because of my blood disorder, I am on blood thinners.  My INR is monitored not only by my transplant team but a hematologist as well.  It is also kept a little higher because I am prone to clot. The average range is 0.8 -1.2.  I am kept at 2-3.

All together, these 3 tests decide what my score is and define my place on the transplant list.  I have varied from 9-22.  Mostly because of my blood thinners.  Either way, I am not high enough on the list to be expecting a call any time soon.  Nor do I have any other complications that would  bump me up any.  So we wait.  Hopefully this helps some of you better understand what I'm talking about.  Hopefully I have explained it all properly.  I should take note from my liver buddy Ricki and give a general disclaimer to my hepatic encephalopathy! It makes my brain mushy!!

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Coming up next...

Earlier today I got a call from the hospital.  This time I recognized the caller id and I was told to always answer any calls from the hospital so I picked it up quickly.

The lady was calling to remind me that I need to have my labs rechecked because they expire on the 23rd.  I was confused because I just had an appointment on the 22nd and had my labs done them.  She explained to me that because my last MELD score was a 22 and that number is "getting up there" I need to have my labs rechecked more frequently.  So it looks like I will be making another trip up to the hospital.  Good thing its in town.

I'm pretty sure that my score will take a drop too.  At the time my INR was a 4.0 which is high.  And I just had labs done for my hematologist and he said that I was therapeutic, so I know it is between 2 and 3.  At least now I know why my arm sprung a leak when were were leaving the clinic!

Next week I go in for my appointment with my Hematologist.  I have a few questions that I need to ask too, so I'm anxious for that conversation.  I am going to check my blood pressure today and see what it is.  I'm worried about the blood flow to my heart.  I have read that low blood pressure is often caused by a decreased flow to the heart.  And now that I know my IVC is clotted off too, I think I have a right to be worried.  Can a heart dry up?  That's what I dream about at night!  So I need to check and make sure that isn't going to cause anymore problems for me.  Is is bad that I no longer feel that rush to get my questions answered.  A few years ago I would have been calling doctor after doctor to make sure everyone agrees.  Now, a few weeks wait doesn't seem so bad.

Next month I have my endoscopy to check for varices and portal hypertension.  Hopefully everything is good down there.  With this horrible cough I cant imagine its pretty down there.  Good thing its a month out!  I just hope that they give me pictures at this place too! It used to be that my GI Dr did them, but he has been phased out and as far as my liver goes, its all up to my transplant team now.  Sounds good to me.  Actually I'm looking forward to it.  David took the day off and will get to take me.  I hate going under when he isn't there.  Even if the whole procedure is under 30 mins.  But I feel that much safer knowing he will be there when I wake up.

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Let there be blood

I was thinking this year I would start something a little different.  Most of my posts here are about how all of medical problems affect my life, but never so much about the actual problem.  And so I figured to help you guys as well as myself understand the hows and whys, I would designate a day of the week to talk about it!  Sounds like so much fun I know!  So it will be a Medic Monday!  And if anyone has any questions, please ask because if I cant answer them, I know a few doctors that can.

I figured today I would start by going way back.  Back before I even knew I was sick.  Way back 29 years ago when I was born, because that is when it all started.  See I didn't just magically get a blood clot in my liver. It wasn't from drinking or doing drugs.  My problem started as soon as the blood started pumping though my tiny little body.  Thanks to the Prothrombin Gene Mutation G20210A.  Its a mouthful, but that is what started it all.

I have heard of someone who bled easily(hemophilia) but never of someone who clots easily (thrombophilia). This gene mutation causes my blood to create more Prothrombin protein, making it more likely for me to get a blood clot. Its a hereditary gene passed down to me from my father.  Something he wasn't aware he had till he was tested for it.  Its a quick blood test that has to be asked for by a doctor.  Its not something that is checked for in any regular blood work.

The normal range for someone who isn't on medication is 1 an can differ a few points up or down.  For me personally, I am being kept at a 2-3.  The higher the number the thinner the blood and an increased chance of a bleed.  A lower number will mean thicker blood and an increased chance of a clot.  So you can see why my meds are always being adjusted.

Last week I had labs and my INR was 3.6.  I had to recheck again today and now I'm at 3.0.  I take 8 mg of coumadin on Tuesdays, Thursdays and Saturdays.  And 7.5 on the other days.  I used to take 8mg on Sundays too but since my INR didn't drop quite enough, we adjusted and I have to go back again in a week.  The ONLY reason I didn't mind taking the Lovenox injections was because there was no adjustments.  But the bruises and shots twice a day were dreadful.

Wishing you all a great week.  And yay for a 3 day weekend coming up!!

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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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On a positive note...

It would be a bit of an exaggeration if I said I have never been so tired of going to the hospital. But that is how I feel right now. My blood has been such a pain lately but I'm hoping Ill be set for another month now. First it was to high and so we lowered my blood thinners. Only to have it bottom out and have to change my doses each week. But Dr. H called and looks like I'm back to therapeutic for now. After a month and a half of weekly checks, I'm free, for a few weeks anyways.

I was talking to day yesterday and he asked if I could feel when my blood is off. For me, a low INR (thick blood) is usually accompanied with lots of sleeping and just all around stiffness. My body just feels like its filled with concrete. When my INR is high (thin blood) I tend to get lots of headaches and dizzy spells so horrible I get nauseous. I'm not sure which one is better. If my blood is thick, I run the risk of throwing another clot. A blood clot in my liver is what landed me in this position. I could develop a clot in my lungs or even worse my brain and have a stroke. But with thin blood I run the risk of bleeding out. So everyday task become extremely dangerous. I could slice my hand cooking for washing dishes. And If I hit my head, I could develop a brain bleed. If I were to get into an accident, I could easily have internal bleeding. So either way, I'm pretty much screwed. That is why it is so important for me to make sure I am at a safe level.

It is so easy to over look the blood disorder that started this whole thing. I have what is called Prothrombin Gene Mutation G20210A. It causes my blood to clot easily. I have had it my whole life. It is most likely the cause of my 2 miscarriages and the reason Anthony was premature. Luckily I am not a smoker, since smoking increases the risk of clotting. But I did take birth control pills, which could have played a part in it all. I hate that there is not telling how long I have had the clot in my liver. When I was pregnant with Anthony i was told I had a third kidney, but when I got pregnant with Alex my spleen was pushed all the way down in my pelvis so that explains that. So maybe I had it then, who knows.

In a way I am very thankful that the clot developed in my liver and not in my brain or lungs. Yes the thought of having a liver transplant sounds scary, but at least I have a chance. And I am well enough to enjoy what time I have now. when I think of all the things I could not have today if I hadn't made it this far, its easy to see this as a blessing. That sounds weird but the truth is, as bad as this is going to be is nothing compared to what it could have been.

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Back to the bottom

I'm coming up on my 1 year mark on the transplant list.  From the outside it seems like it was a breeze.  But on the inside I can feel the storm brewing.  I know this is just the calm before the storm.  Like back in FL when we knew there was a hurricane coming and everyone was at the store getting all their supplies.  Every one was smiling and playing nice, but if you looked closer you could see the fear in their eyes.  I put on my happy face.  I do what I have to do.  I live my life.  All while one little thing could turn it all upside down.

I had my hematologist appointment last week.  My INR is at a record low of 1.2.  And that's after a few days of being back on 10mg.  So now I am back up to my highest dose of 12 mg alternating with 10mg.  Hopefully this will help bring it up. The low INR makes my low MELD score make sense.  Right according to OPTN its <10, so I'm back to the bottom of the totem pole.  Not the greatest news, but I know it could be worse.

I kind of like it down here.  After all, I should be happy to not be so sick...right?  I am still "stable"  and all my other organs are doing good too.  I am so blessed to have this time with my family. I'm alive and living at home as comfortably as I can.  Sure beats being in the hospital.  Each day praying the Drs find my perfect liver.  But I also know that someday that will be me.  And I am so afraid of that day.  So for now I am just going to smile and be thankful for the health I have today. Today I am alive and that is worth celebrating. 

Here is to living life. Tonight hug your family and freinds.  Tell them that you love them and how much they mean to you.  Because tomorrow isnt promised. Life is a gift.  Live it then give it!

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Crazy much?

Well the rest of the week is doctors for me. Tomorrow I see my hematologist.  Hopefully my blood is good.  It was nice having a week off of labs.  Friday is therapist day!  Whoohoo!  Next week the little one has his 2 year check up and then I have the dreaded Liver Clinic. I shouldn’t say dreaded, because I really love my Dr and the staff at the Clinic are freaking awesome. Do you feel a “but” coming on?!?

But…This whole waiting game is messing with my head. If I’m going to be sick, I want to be sick now. I want to be fighting to get better, I want to know that getting better is an option. Instead I am waiting to get sicker. Waiting for my body to quit fighting for me, and hoping when I do get sick its not so bad that I cant come back from this all. I completely suck at waiting. Or does waiting just suck this much? I try to keep busy, but nothing helps. Sometimes I feel so alone and other times I feel like everyone is judging me. I'm pretty sure I’m going crazy.

The weather has been horrible, the boys are sick and cabin fever is setting in again. I cant drive. I mean literally, I don’t know how. And even if I did know how, thanks to my good friend H.E. driving is on my big fat do no do list. I’m feeling more claustrophobic than ever. I want my own space. OCD is kicking in and I want things done my way. Not easy to do when you are living in someone else’s home. Speaking of OCD, I have become obsessed with hand sanitizer. Did you know they make lotion with sanitizer in it? Why am I just now finding this out? Oh yeah because I have sanitized my hands to the bone. OK maybe not the bone, but they look dead. Dry, white and flaky. Gross
It’s a good think I see my therapist this week eh? I have so many things going on. I’m trying so hard to keep my head above water. But sometimes, it feels like there’s just no hope. I really need to get my camera out more. I have the sudden urge to go run. I’m jumping out of my skin here. Ok now I sound really crazy. Just going to stop here!
Here’s to hoping they don’t send me to the Looney bin on Friday! Hope everyone is having a great week.

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More Bad Blood

Because of my blood disorder, I am on blood thinners to prevent another clot. Last week was my routine monthly PT-INR check for my hematologist. Afterwards we made a few stops so I could get the final stocking stuffers. When we got home, there was already a message from the Dr. This is never a good sign. So I called him back and he told me that my INR was 3.6. I'm usually around 2.1. So this was a big change. He asked me to move my doses around so that I would be taking 9mg 4 day a week and 10mg the other 3 days. And I was scheduled to go back in again in a week. Fast forward to yesterday. Same routine, went in, got my labs done, came home and no message! Woohoo! NOT! Got the call around 4. I'm at 2.8. Still a little higher than my Drs would like. So now we are dropping the 10mgs and going 9mgs all week. And in 7 days, I will be back in there getting stuck again. Thank God I got over my fear of needles when this all first started!
So what does 2.8 and 3.6 mean? I don’t usually explain things because there is a 90% chance Ill screw it up, but here is how it was explained to me.

PT= Prothrombin Time. It is a measure of how quickly blood clots
INR= International Normalized Ratio. Is the standard unit of measuring the PT.

Being on blood thinners means I am monitored closely to make sure that my blood isn’t to thin or thick. The average range of someone not on blood thinners is around 1. I am usually around a 2.1 or 2.3. So anything above 3 is cause for concern. As my blood gets thinner my risks of bleeding get higher. So things like bumps on the head, falls and cuts are much more dangerous. And for those of you that know me, those things are kind of my thing!

My INR also changes my MELD score, which determines my place on the transplant list. As my liver disease advances, my liver has a harder time processing my Vitamin K, there for causing my blood NOT to clot. And that means a higher INR. And a higher MELD.

The last time I got to see my labs, both my bilirubin and creatinine were at 0.6 and my INR was 2.4. This game me a MELD score of 16. When my INR is at 3.6 that bumps my score up to21. But being on blood thinners means that unless there is a change in my bilirubin or creatinine then my MELD wont change much because its being controlled.

So here is to turning yellow from jaundice (bilirubin) and my kidneys giving out (creatinine). I joke about it, but its really what I am waiting around for. Eventually something has to give right?

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