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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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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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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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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S is for Spring and Scope.

**Warning!  Following this post is a graphic photo**

Its almost spring, and you know what that means right?   Flowers, bunnies and the inside of my esophagus.  What?  That isn't what spring is to you?  Damn.  Guess it must just be me.  Every year about April I have an endoscopy done.  Its so routine now that I actually look forward to it.  I don't mind the sleepy juice and for the most part always wake up feeling rather refreshed.

Why do we do this every year?  For something called varices.  As it was explained to me, when blood flow to my liver is slowed, that the blood can get back up and sometimes it gets back up in small blood vessels in the esophagus.  Causing varices.  If one of these were to rupture, I can expect to vomit blood or have blood in my stool.  Sounds really pleasant, I know! So in order to be one step ahead of the game, I am monitored to make sure I don't have any.  They also measure the pressure in my portal vein, because the risk of a bleed increases with added pressure. I am so thankful to have both neither varices or portal hypertension!

The coolest part about it all, is that they give me pictures.  And so if you have ever wondered what the inside of my esophagus looked like, today is your lucky day.  I find it rather fascinating, but some might want to hurl!  Be warned!  And to some it may look bad, but last night I saw a photo of an esophagus with varices. Big difference than this!
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