Friday, November 18, 2016

Searching for Doctors

I thought for sure that with the referral I received in the mail, from Tricare, yesterday that I had my appointment for the gastro doctor in the bag.  Nope! Not even close.  I mean the distance I had to drive to this place was nuts but it was in network so I had no choice, right?

I called the doctor's office.  Turns out she is no longer working at this particular office.  Oh jeez!  Great.  I asked the receptionist if the other two gastro docs would take the referral as it states that my referral is basically an open one as long as the provider is in my network.  Not only would she not take it, she made me go call my insurance office too.  Turns out the doctor she is the receptionst for does take my insurance.  Well they can bite my buttons.  I searched and found a different doctor closer.  The reason why Tricare didn't pick this doctor first is that this one is more costly.

I think I've complained before that Tricare is cheap!  Oh and that it doesn't attract quality doctors.  The first doctor they would have sent me to was only a 3 star rating.  Not very good for having practiced for 20 years.

I called the doctor that is closer.  I'm hoping that I'll hear back on Monday.  His office is only open M-Thursday.  He also only a 3 star rating.  My insurance is not going to attract the top doctors.  I'm not sure what insurance will.

Good news is that I have a lab draw on Monday.  Tuesday I have my contrast CT to see what is going on in the left side of my upper abdomen.  I have pain.  It hurts to the touch.  It is now making it difficult to eat.  I cannot get comfortable when I sleep.

So tired my brain is having difficulty typing.

Wednesday, November 16, 2016

Melting Things Down

It all come down to a puddle of melted mess at times or so I figured out last night.  It wsn't just because I was melting down Eily's crayons to make new ones but because really that is how life is. Messy!

DH was stressed about his position in his class.  He is worried because he is no longer in the top two of the class.  His last grade made him fall to third.  Now he is struggling to make it back to the top again among a class of nine.  Everyone seems to have grades in the ninetys.  He wants to make THE LIST for graduation not just graduate.  With another test coming up on Friday he is stressed.  His stress is causing me stress and Eily stress.  We all feel it in different ways.  I wonder if his stress is the reason why Eily can't poop no matter how much prune juice and metamucil we give her.  I wonder if his stress is the reason why my blood pressure is going back up.  So I spoke to him calmly last night.  It took a bit.  He didn't want to even sit down with me and discuss his issue.  He didn't want to talk about his attitude. Guys don't have problems.  Guys don't have attitudes.  Especially military ones.  I got the whole, "I don't want to talk about it.  End of story.  I'm leaving the room now.".  I was surprised I even got that much verbage.  I made him talk.  I have my ways.  It is a calming voice.  It is the voice of authority.  It is the mommy voice.  All rolled together it does work.

The mess of it is that I am dying.  Not today.  I'm alive today.  We are all dying from the day we are born is what I tell most folks.  Depressing?  Yes I guess.  But we have plenty of time in between the birth and death to make a difference in the lives of others usually.  For some it might just be a breath of air or a smile and they slip away.  For most of us we have more time.  I'm spending that time making a difference in any way I can.  Maybe I can only bake cookies for the soldiers at my husband's school for now.  Maybe after I get a new liver I'll be feeling better I can do more again like I used to?

I know I make a difference in my daughter's life every day.

So to melt the rest all down to facts of what I still am waiting on

  • Gastroenterologist to call
  • Hepatologist to call
  • One of the above to put me on the Liver Donor list my MELD score already makes it so I'll be on it
  • Contrast CT of Left Side Abdominal Cavitiy to rule out Splenomegaly
  • More Labs for my Liver
  • Hopefully a Live  A Positive Liver Donor Match

Monday, November 14, 2016

Squeezing in a Doctor Visit

Today I was able to squeeze in a doctor visit at my clinic.  I did have to beg and use my condition.  After all I did need to get it on record with the paperwork I have on hand.  See the Primary card doctor they have me seeing isn't a doctor at all but a Nurse Practitioner.  They are good but I need to see a doctor.

Besides my PCM NP was busy today they told me.  Meanwhile I got the first of the Hep B shots done.  I'll need one or two more in the cycle.  I'll know more about that with each visit.  If you know more readers tell me.

So I got to see the doctor.  The actual doctor that I had my first appointment with at this clinic the first time I was here.  He admitted right off when he saw my spouse that he the doctor needed a haircut.  The Army has appearance standards.  I offered to shave his head for him.  Just a bit of laughter for all of us there.

The serious part now.  He is putting in a referral for me to see a hepatologist in St. Louis, MO as he cannot put me on the donor list even though he knows I need to be on one.  His nurse mentioned I need to have a case worker also.  He said they'll coordinate my care one I've seen the hepatologist in St. Louis.

Yes, I'll still be seeing the gastroenterologist off post.  I hope to here from them soon.  I hope to be able to coordinate all my appointments over Christmas so that my spouse can go with me.  It would just make things easier.  Otherwise I'll be dropping off the little one at a friend's house or daycare and driving alone to St. Louis.  Two hours there and Two hours back.  Yuck!

My doctor palpated my abdomen on the right side today to do the liver check.  It was really tender.  I had him check the left side too since I've been getting some odd pain there as well.  Not in the stomach either.  He got the spot easy enough.  It could be my spleen.  So to check it out he is scheduling a contrast CT, but not STAT.  So maybe that too can be done over Christmas?

Family was wondering if we were going to fly home.  Um, no.  I'm not well enough.  I'm hoping they eventually realize just how serious this situation is.

I'm a fighter I'm going to fight this.

If you would like to see if you could be a possible A Positive Live Liver Donor please contact me.

Sunday, November 13, 2016

The Doormat Speaks

These past few days have been ones of wonder.  The family that I thought would take my disease seriously seems to have brushed it off.  I do understand a bit.  I'm not going to say it doesn't hurt.  It does.  The family that has come to my aid the most has recently experienced a loss to the same disease, Alpha 1 Antitrypsin deficiency .  I really appreciate their efforts.  They have gone above board for me.

I still need plenty of offers for an A Positive Live Liver Donor if I am to find that perfect match.  If you think you'd like to be a volunteer let me know.

Today I made the decision to stop dying my hair.  I mean why add more chemicals to my body at this point.  Sure hair dye proclaims that it is safe, so does nail polish and all of a sudden bam in the news you hear about some sort of chemical in it that isn't safe and we have to ditch our supplies.  I recently had to throw out all my old makeup because of the Talc issue.  I'll be throwing out my nail polish today too.  I mean why not?  I'll start over with the safe stuff.

I cut my hair today.  I've been cutting it for years.  I haven't cut it since sometime in the spring and it really needed it.  I think this is the shortest I've cut it in years.  But the curls are coming back nicely.

Yes that is me.  Big change from the other photos.  My hair is longer in the back.  I look so old from being sick.  My nose is still pink from where Eily bit me.  The lump is going down at least.  Man does she like to use all her teeth!  Right on the bridge of my nose.  Don't worry it is just a phase that some 2 year olds go through and she doesn't do it all the time.

While Eily sleeps I get to do some housework, jewelry making, computer work, cookie baking, reading or other things that need to get done.  Last week I set a smokey topaz into a rose gold semi mount ring.  This week I'm working on a kyanite and white sapphire necklace.

Eily went as a Princess for Halloween.  My husband took her Trick-or-Treating while I stayed home and handed out candy.  I was just too tired to walk with them.

So to end this blog post folks I'm still in need of an A positive Live Liver Donor.  If you think you'd like to volunteer to be a live Liver donor and a possible match for me please contact me.

~ Thank you.

Friday, November 11, 2016


It is rather hard to believe that my liver is dying off.  I know that my skin has turned yellow.  It did so a year ago and I commented on it back then.  I know that I've been tired for quite some time.

Last month when my cousin Kyle died I was shocked.  Did I have the same genetic disorder?  Well it turns out that I do.  My lab results came in this week.

I am going to be put on the liver transplant list.  By the time I get a dead person's liver I'll be dead since the list is very long.  My best bet, even my doctor informed, is a LIVE LIVER DONOR.

I need an A Positive live Liver donor.  Your liver will grow back.  To schedule the surgery takes about 4 to 6 months after all the testing is done.  Your liver grows back in about 8 weeks after the surgery.  Oh and they don't take all of your liver but only a portion of it.

My primary care doctor put me in for my referral to see the gastroenterologist.  I will hopefully get a call from one in the next week.  Since the holidays are coming up I'm not going to hold my breath on getting an appointment this year as there isn't much of this year left.  You also have to realize what type of insurance I'm working with.  I have Tricare.  I'm a military dependant.

There is no cure for Alpha-1 Antitrypsin deficiency.  The only thing I can do is hope that I can get a liver transplant.

Meanwhile I need to update my final wishes.  I've talked about them, albeit jokingly, with the family.  Now this has to be a serious talk.

I guess I'll be back to blogging more often now as a new journey in my life has started.  I'm hoping I have a long road with a happily ever after.  For now it is a day-by-day and a plan for the ever-after and final ending.

If you think you'd like to be my Live Liver Donor please contact me.  I don't need your whole liver but just a part of it.  I don't need it today.  Like I wrote above it does take some planning.  Remember I need a perfect match of A+ (positive).