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 Appointment

I had my Transplant Clinic follow up on Monday.

It was a little different than usual.  I was alone, had had no routine scans or test done and I had never met this Doctor before.  No worries.  OK, I was a little worried.

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30 Things About My Invisible Illness You May Not Know

Invisible illness week is this month (September 28th - October 4th)  I have so much I would like to share about my illnesses but have somehow gotten away from that.  So Im kicking off the month with this fun meme I found over at Invisible Illness Week.

1. The illness I live with is: Budd Chiari Syndrome/ Prothrombin G20210A

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: All the way back to highschool.

4. The biggest adjustment I’ve had to make is: Not being well enough to be the mother and wife that I want to be.

5. Most people assume:  That I feel ok because I smile and push on.

6. The hardest part about mornings are:  Trying to wake up after just a few hours of sleep.

7. My favorite medical TV show is:  Hmmm Does NBS's Night Shift count?  I miss Rescue 911!

8. A gadget I couldn’t live without is: My phone.  

9. The hardest part about nights are:  Not being able to sleep or get comfortable.  Its hard for a belly sleeper to sleep well with a liver that is doubled in size.

10. Each day I take __ pills & vitamins. (No comments, please) Right now I only take 2 meds in the morning and 4 at night.  

11. Regarding alternative treatments I:  will entertain anything but I have faith in my doctors.

12. If I had to choose between an invisible illness or visible I would choose: Visible. Its easier to explain things others can see.   

13. Regarding working and career:  I would love to go back to work after my transplant, but what or where, I have no idea.

14. People would be surprised to know: I was told my best option was to terminate the pregnancy that alerted me to my illness. 

15. The hardest thing to accept about my new reality has been: My health is only going to get worse before it gets better.

16. Something I never thought I could do with my illness that I did was: Have a baby. I was diagnosed during my pregnancy and in the very back of my heart a voice said it wouldn't work.  It did.  And my little man is amazing!

17. The commercials about my illness: That would be interesting to see.  There are none yet.

18. Something I really miss doing since I was diagnosed is: Having a beer with the hubby.  
19. It was really hard to have to give up: The idea of working to help support our family.

20. A new hobby I have taken up since my diagnosis is: Reading

21. If I could have one day of feeling normal again I would: Spend the day with my family doing something crazy like zip lining and spend the night with the hubby having a few drinks. FYI- my liver disease was not caused by my love of a good drink!

22. My illness has taught me: That I am stronger than I thought I was.  And all the days I thought were so bad, were nothing.

23. Want to know a secret? One thing people say that gets under my skin is:  I wish I could stay at home all day and not have to work.

24. But I love it when people:  That they know I am trying my best.

25. My favorite motto, scripture, quote that gets me through tough times is:  "When the world says "give up."  Hope Whispers "try one more time."  Story of my life!

26. When someone is diagnosed I’d like to tell them:  They are not alone.  

27. Something that has surprised me about living with an illness is:  How many friends will depend on you since you are always there, but not ever ask how you are doing!

28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me goodies.  Once when I had zero appetite a friend brought me protein smoothie popcicles.  And just yesterday another brought me lunch since I couldnt make it to the restaurant.

29. I’m involved with Invisible Illness Week because:  It needs to be shared.  No one can see it.  And if we don't talk about it, they never will!

30. The fact that you read this list makes me feel: like I could really make a difference.

Do you or anyone you know live with an invisible illness?  

-XOXO Kim

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2013 Highlights

Before we close the door on another year, I just wanted to take a minute to share a few things we did in 2013.

 Soccer!  It was amazing to see Anthony improve in just two seasons.  Watching him practice and then seeing his hard work paying off made me so proud.

 

There was a flow constant flow of Foster dogs this year

Haiku.  She started a love for huskies in Alexanders heart!

Bruce Wayne the Dane

Sweet baby Marie

My niece Jamisen turned one.

Jam Jam.  <3 her!

We had some awesome adventures this year.

Exploring at the park

Despicable Me 2.  Both boys actually watched the whole thing!

I have a crush on Ballapeno.  Clearly he likes me too :)

Road trip with the boys and dogs

Poncho met some cows

Hayrides at the Rio Cibolo Ranch

Anthony started making dinner once a week.  Lots of homemade pizzas and spaghetti this year.

And I realized that my baby isn't a baby anymore. In 2 weeks he will be 5!!

It was a great year.  My family is happy and healthy.  The boys are growing into little men.  With opinion and ideas of their own.  David was finally put on a better work schedule which meant he was home for dinner more than just a few weeks this year.  I made friends.  Last year I made a goal to be more social and not let my illness hold me back and so I did.  It might seem silly to some, but being pretty much house bound gets super lonely at times, so its a big deal to me.  I said I would not let my illness stop my boys from doing things they wanted to do and with the help from my family and friends, we did so much more this year.  Specifically Soccer.  That was pretty much the highlight of the year.  We are blessed.

As for me, health wise, I have been doing great.  Stable is what the doctors call it.  My liver function is still ok.  The nodules on my liver have not grown.  I have not had any major problems with my blood disorder.  I did have a scare, but and early mammogram showed us there was nothing to be worried about.  And I have been able to stay on top of my Encephalopathy so my head has been foggy but nothing too bad.  All this together means, less lab work and more time off in between doctor visits!  WIN!

Now we look ahead to all the new year has in store for us.  This is the year that Alex starts school.  That will be the big thing for us this year I think.  And soccer!   Here is to a year full of good health and lots of laughter.  To new friendships and more adventures.  I'm so ready for this!  Hello 2014!

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Friday 5: Me and Liver Disease

Liver Disease is a taboo subject to most people.  When I tell someone that I have a liver disease they usually think it is from drinking.  They they ask  if its from hepatitis.  No and nope.  When I tell them that I have Budd Chiari Syndrome they look at me like I am speaking Marshallese.  What is it?  How did I get it?  How to I cure it? Is there medication?  Here are 5 facts about me and Budd Chiari Syndrome!

1. Budd Chiari Syndrome is a very rare liver disease caused by a blockage in the hepatic veins that carry blood out of the liver into the heart.  For me it was chronic.  Over time as my veins were being obstructed my body created a web of veins around the clots. 


2. The most common cause of Budd Chiari Syndrome in the US is blood disorders.  This was the cause for me.  Shortly after diagnosis I also found out I had the Prothrombin Gene Mutation which makes my blood clot much easier than normal.  This was passed down to me from my father who tested positive after I was diagnosed.  My brothers and sisters as well as my boys have a 50% chance of carrying the gene as well.  But no one else has been tested yet.  


3. I had no idea I was even sick.  My severely enlarged liver was discovered when I went in for an pregnancy ultrasound.  As my belly grew, the pain got worse and I was retaining a lot of water.  Now days, the pain comes and goes.  When its bad, its pretty bad.  The encephalopathy is what gets me.  The most common symptoms are ascites or fluid build up.  Pain in the upper right abdomen.  Nausea, weight loss (none of that here), vomiting blood, enlarged spleen and edema (swelling).  I've been able to hold off a lot of swelling with a low sodium diet thankfully because I don't need any help in the puffy department.


4. There isn't an easy fix for this one.  The only way to "cure" it is with a liver transplant.  Until then, my body will work as hard as it can until it just cant anymore.  But eventually my other organs will fail.  This will bump me up on the transplant list and get me closer to my new life.  But for now, its a low sodium diet, exercise, blood thinners and other meds that keep me going.  


5. What if.  What if I never knew.  It was by luck that I found out.  I had given up all hope of getting pregnant again.  So what if I never was diagnosed?  Well when I was diagnosed and all my problems with past pregnancies were discussed, my doctors all agree that I probably had the clots back when I was pregnant with Anthony 3 years prior.  What is the life expectancy of someone who is not treated? Three Years! I was hanging on my a thread and I had no clue. Long term survival following a successful complete liver transplant is between 69 and 87%.  I can handle that!

Every day I open my eyes I thank God for giving me the chance to enjoy one more day.  Life is a gift.  Don't take that for granted.  Love the people that love you.  Forget the ones that don't.  And if you haven't yet, register to be an organ donor at Donate Life America!  

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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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Don't blame the booze!

Day 7 (April 7) – Sensationalize!

Say WHAT!? What’s the most ridiculous thing you've heard about health or your condition? Where did you hear it and what did you think?

For the most part I am pretty thick skinned.  I learned real quick not to let what others thought or said about me hurt me. Growing up in an alcohol fueled family, I am was no stranger to the bottle myself.  There were many nights that I can't even recall.  Places I have no memory of.  And a lot of guilt and regret about it all.  But guess what people...

My liver Disease is not the result of drinking alcohol!!

My liver disease was brought on my a blood disorder that causes my blood to clot. My love of Jack and Coke...not at fault!  I once had a friend joke when I told her that my liver was failing about how she didn't know I was still hitting the bottle and I better put it down.  She laughed and I laughed but truth is, its no joke.  As much as I try not to, I do get upset at all the memes floating around joking about how someone is going to need a transplant because they are going to party hard.  I see my friends update their status on Facebook about how they feel sorry for their livers.  And while I am not one to judge them or expect them to see the new look on it that I have, it still makes me sad.  So no, drinking did not cause my liver disease, but it could harm one of them.  

I am not saying that having a drink is going to kill you.  Every now and then even I miss having a few drinks with my friends.  There is another thing that drives me nuts.  Even though I don't drink, I can still have fun.  I can go to a bar and to a party.  I've even played beer pong, with a partner who was brave enough to drink for me.  Poor guy!  Moderation is key people!  

For some, memes like these may be funny.  But for the 15,735 people who are on the liver transplant waiting list, its not so funny.   Liver Disease and transplant is no joke.  

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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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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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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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Menu Plan Monday 2/11/13

Ever get half way though the week and realize you need that one thing to finish dinner.  Yes that one thing that you forgot to get.  This happens to me all to often.  The only problem is that I can't just run to the store and get it.  I can't drive.  Yes I could ask a neighbor or my in laws  but I try to keep the favors to a minimum. Each week I collect ideas for dinner and on the weekends (usually) I write out my shopping list.  Check and double check before we go to the store.  

Cooking is something I have always loved to do.  Thanks to a father who was an amazing cook.  We ate good in our house.   When I wanted mac and cheese from the blue box like my friends had, he would come home with what ever kinds of cheese they had at the only store on the island and make me the best mac and cheese a kid could ask for. I would pout about it until I tasted it.  I really loved that he loved cooking for us and I hope to do that for my boys. 

To be honest I have kind of fallen into a pretty small rotation of meals.  And it is getting kind of boring.  My transplant team has asked that I keep my diet low sodium.  My hematologist has asked that I limit my vitamin K or keep it at the exact amount daily so I don't throw off my medication.  And I have been really bad about following them.  Mostly what I need is a variety.  I think I am going to make it a rule that every week must have 2 new recipes.  And I am going to be better at sticking to my doctors recommendations too.  Ive done it before, I just need to find a way to merge that all into meals the whole family can enjoy.

So to hold myself accountable, I have decided to join The Organizing Junkie and her Menu Plan Mondays.  Now remember that I have commitment issues so I will try my best to share each Monday.  I might be a day late or skip a week.  I'm only human.  But I hope this will become a regular here for me.  So lets kick it off with this weeks dinners.

Monday- Tonight I think we will be our clean out the fridge day.  There is leftover pizza and salad and chicken.  David still isn't feeling well so we are going to the Dr.  So if we get home later than expected I'm glad to know dinner is taken care of already.

Tuesday - 2 Bean Chicken from The Gracious Pantry.  All I needed to see was this picture and it was decided, I'm so making this.  Looks good right?!  

Wednesday - Its Ash Wednesday.  Keeping it easy with a tuna casserole and salads.

Thursday - Herb Crusted Pork Chops with vegetable-tian and brown rice.

Friday - Garlic Chicken with mashed potatoes and carrots. 

Saturday - Im going to try Crock Pot Beef and Broccoli served over white or fried rice.  Not sure yet.

So there is what will be cooking up over here.  For more recipes and to check out more menus stop by I'm an Organizing Junkie.   What is on your menu?

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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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Finding {HOPE}

The theme this year over at Invisible Illness Awareness Week is:  Invisible Illness?  Share your visible hope.  And seeing as finding hope is what started this blog, I wanted to share a few moments in my journey where I found hope.

This first Halloween was the hardest. Just days after I was diagnosed.  I was feeling so horrible but this little soldier was so excited to go trick or treating.  At the end of the night, after days of carving pumpkis, painting them and a night of trick or treating, he said "I love this Halloween and I love you"

"Some day I'm gonna fly a plane.  Will you watch me mom?"

He has been planning his future since he was 3.  And I am always a part of it.  He gives me hope!

"Let me take your picture so I don't forget you while you are gone"

The moment it really hit me that Anthony really understood. I hoped he would never forget me!

Another year had passed and I found hope in making it that far.  In just a short year, I went from not knowing if my baby or I would make it.  To watching my first born grown in to his own little person and feeling so in love with my family.  There was hope to be found it everything...

In first steps

In nursing

In green ribbons

In green bracelets

 

In my family

Hope is everywhere!  In the beauty of an amazing sunrise. The sweet smell before a good rainstorm.  You will find it in the smiles and hugs from your family and friends.  And some days you will feel like its not there, but I promise, it is.   What gives you hope?

Once you choose hope, anything's possible.  ~Christopher Reeve

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30 Things About My Invisible Illness

1. The illness I live with is:  Budd Chiari Syndrome(liver disease) and Prothrombin G20210A(blood disorder).
2. I was diagnosed with it in the year:  I was diagnosed in 2008.  I was pregnant and the ultrasound showed that my liver and spleen were enlarged.. 
3. But I had symptoms since: 2004.  I was pregnant(sensing a routine here!) and had gone in for the same big ultrasound.  The tech told me I had a fallen kidney.  He said that I had 3 kidneys and one was way down in my pelvis.  I didn't have any pain though.  However when I was diagnosed in 08 it was found that it was actually my spleen in my pelvis that had been pushed out by my growing liver and uterus.  
4. The biggest adjustment I've had to make is:  Asking for help.  And accepting it too!  And I still struggle with it.  I want to be able to do things for myself and my family.  Then on some days I just can't.  Letting people see me so incapable and having things done for me that I could normally do on my own is hard.  It hurts.  But I"m learning to look though the help and see it for the blessing that it is.
5. Most people assume:  I'm not sure what people think of me.  I could try but I think it would all be negative and that's not good.  I guess most people would assume that I was perfectly fine.  The probably assume that I am not being honest about being sick because I don't look sick.  
6. The hardest part about mornings are:  The insomnia from the night before.  This week I have been averaging 4-5 hrs a night.  Tossing and turning and trying to get comfortable.  It doesn't help that I am so fatigued that I am in bed for 5-6 hours during the day.  
7. My favorite medical TV show is:  I don't watch a lot of medical shows.  Unless Greys Anatomy and the old school ER count. Oh and Dr. Quinn Medicine woman reruns!  I have a weird taste in TV, I know!
8. A gadget I couldn't live without is:  With out a doubt, my phone.  I live off of it.  It is my connection to the outside world since I am stuck here at home.  It is my diet tracker, my mile counter. My camera, my alarm, my flashlight.  And I am also a text addict.  
9. The hardest part about nights are:  Trying to fall asleep.  I have horrible night anxiety.  I have medication for it. But at the moment I am out.  And I have to go back to the therapist to get my refill.  I really need to do that.  But after such a sad summer, I don't think I am ready to face it all.
10. Each day I take __ pills & vitamins: Between 4-6.  My doses change quite often.  Sometimes we add vitamins that I am lacking.  Or I get infections and the # goes up.  Nothing stays the same for long where my medication is concerned.
11. Regarding alternative treatments I:  Wish there was one. I'm just here waiting to get sick enough to receive my transplant. 
12. If I had to choose between an invisible illness or visible I would choose:  Invisible.  I only have to choose what and with who I want to share it with.   While I seem to share like the wind here on my blog, there are many people in my life that don't know the whole story.  And that works for me.
13. Regarding working and career:  I can't wait to get back to work.  To be well enough to work.  And to not have to take the medications that are preventing me from working.  Mostly I just want to contribute to my family.  The hardest part about not working is feeling like we are struggling because of my illness and there is not much I can do to help that.
14. People would be surprised to know:  that I am just waiting for the other shoe to drop.  Some people with liver disease get sick quickly and get their transplant fast.  My body is taking its time.  The shock on peoples faces when I tell them I am not sick enough for a transplant is hard to swallow.  Mostly because I am shocked myself.  Mostly I am scared.  Just waiting for my body to fail me. 
15. The hardest thing to accept about my new reality has been:  That my family will watch me get sicker.  It was easier when my boys were younger and didn't understand much. I was hoping that by the time they really understood I would be better.  My boys are loving boys and I can already see their compassion and caring.  I know if they see me sick, they are going to hurt for me and that is the last thing I want.
16. Something I never thought I could do with my illness that I did was:  Make real friends.  Not the ones who just feel bad, but the kind that love you back completely!  I am blessed.
17. The commercials about my illness:  There are none.  The day I turn on the TV and hear "Do you suffer from Budd Chiari Syndrome?"  I might pass out!
18. Something I really miss doing since I was diagnosed is: not second guessing myself.  Or not having to keep tabs on myself in my head so that I don't forget anything.  It has made me a tad paranoid.  Its mentally exhausting trying to keep up with myself some days.
19. It was really hard to have to give up: Honestly....Spinach.  Silly I know.  I can eat some greens with out throwing my blood into a frenzy, but high Vitamin K foods work against the blood thinners that are keeping me from clotting again.  Spinach was my favorite and its been 4 years since I've had some. Maybe this is a silly answer...
20. A new hobby I have taken up since my diagnosis is:  I've become a more active blogger.  Its how I have connected with so many who are also living with a chronic illness.  Things are growing around here!
21. If I could have one day of feeling normal again I would:  Spend hours playing with my boys.  To do that and not get so tired, would be the best day ever!  We could run for hours, stay out in the sun, eat what ever we want.  And Id have an ice cold beer at the end of the day.  
22. My illness has taught me:  That no matter what you do, how good you are, how healthy you are, how religious you are, it can happen to you too! Never in my life did I ever imagine I could end up on the liver transplant list.  
23. Want to know a secret? One thing people say that gets under my skin is:  "to much drinking?!"  Not all liver diseases are caused by drinking.  And drinking actually thins the blood, so who knows, maybe if I was a big drinker my blood never would have clotted?  And yes I know my I said on a normal day I would end with a beer.  Just one!  I was never a hard core drinker.  But I think because alcoholism is part of my family, people just assume that is the cause.  Its not.
24. But I love it when people:  Tell me how well I am doing despite being sick. They acknowledge that it isn't an easy thing to do and that is nice to hear every now and again.  Or when I get random emails, texts and letters in the mail.  Being sick can get so lonely, so when people reach out, it's the best!
25. My favorite motto, scripture, quote that gets me through tough times is:  "When the world says give up, Hope Whispers, Try one more time."  That is how I named my blog!  There is always a little hope.
26. When someone is diagnosed I’d like to tell them:  That they are not alone.  I had such a hard time finding anyone to talk to about my condition with because there aren't a lot of people with it or talking about it.
27. Something that has surprised me about living with an illness is:  The impact you can make on people.  If I were to ask friends to be organ donors before I was sick, they probably wouldn't.  But seeing me sick and knowing more about it has convinced many of them to register as donors!   
28. The nicest thing someone did for me when I wasn't feeling well was:  Watch my boys so I can rest.  Its the little things.  My MIL has been taking my 3 yo to her house while my older one is at school.  Its amazing how good a little bit of silence and rest helps me.  I get a lot of foot rubs too.  When my husband or sister make/buy dinner so I don't have to...love it!
29. I’m involved with Invisible Illness Week because:  There are so many people out there suffering with out anyone acknowledging  them.  Far to many people have the mindset that if they can't see how sick you are, you must not be that sick at all.  To many of us suffer alone because of it. 
30. The fact that you read this list makes me feel:  Loved!  Its nice to know that you take a few minutes to see what the heck I'm talking about now.  

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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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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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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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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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