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).

Tuesday, October 11, 2016

My Cousin Died

Last week my cousin died.  He didn't get the live liver donor in time to save his life.  He died from another bleed out while on the operating table.  We were all to late in our efforts to help out.

A  Go Fund Me  has been started for his widow to help cover the expenses she has incurred with her travelling back and forth and time off from work.  Help out if you can dear readers.  Here is the link for Kyle Broadwell

I still can't believe my dear sweet cousin is gone.  He was only 42.  I'm in shock.  I'm going about my daily routine pretty much in zombie mode.  Because it was a holiday weekend, one in my family we'd celebrate as a Thanksgiving of sorts when I was a kid since every old person headed south to Florida, the three of us went about town.

The night of Kyle's death I ate comfort food, as in junk food.
 Friday night we ate out.  I couldn't eat.  I ended up crying at the restaurant.
Saturday night we ate out again.  This time I did eat and ignored the world around me.  I was still choking back tears.  It has been hard.  DH hasn't been supportive.  By Monday night I had to have a long talk with him about his nasty treatment of me this weekend.  He apologized.  I mean geez if it had been one of his family members we'd of flown home for sure.  I knew we couldn't because of his school so I took what I would have spent in hotel, airline tickets, car rental, and food added it up then donated it.

I know I'm rambling.

I'm a mess.

I'm now waiting for my results of the Alpha 1 antitrypsin to come back.  I'm not sure how long it will take.  I'm really hoping I don't have.  It is bad enough I have moderate NASH and Asthma adding the Alpha 1 in also would be like stamping an expiration date on my forehead.

Thursday, September 29, 2016


My cousin Kyle Broadwell is in need of a live liver donor.

If someone would like to be tested to see if they are a viable candidate, the person volunteering under their own choice, and who has an o+ blood type, must contact Kyle Broadwell .

Words from Kyle:
I'll try to keep this update as short as I possibly can. I have been diagnosed with an alpha one antitrypsin deficiency which is basically a genetic disease that attacks the healthy antibodies in your system and either destroys the lungs or the liver. Mine is an extremely rare form. There is only one option and that is to have a liver transplant. Last Thursday I became very ill and Sherry was able to get me to the emergency room while my mother took care of Luke.
I began to have some massive internal bleeding all of a sudden and rushed into surgery. They were able to stop the bleeding and I was air lifted to New York City to Montefiore in the Bronx where I got originally set up onto the transplant list. CVPH was able to stop the bleeding however if it started not to work or if I develop more they wouldn't be able to get me to someone with the staff and expertise in time. I made it out of Montefiore icu and now recouping best I can. There are a million things in the works and everything can change in a heartbeat but we are playing everything on the safe side. This hospital has a very good success rate and I can very well go on for another 40 or 50 years.
As much as I want to rush back home I'll need to play things right and I'll explain a few things that are going on so we are all on the same page.
As long as I'm still capable of making my own decisions I will. If I can't then Sherry is the second point person followed by my mother if Sherry can't.
I'm officially on the donor waiting list and can take a liver from someone who has passed or a living donor. Organs are in such short supply Living donors are an option and sometimes the best option because things can be scheduled and controlled more plus their liver can grow back to 95% of what it was before. Recovery time is around 12 weeks with feeling back to normal fully by 1 year. Out of all the people applying to be a living donor candidates only 10% of those will be approved so the more candidates the better.
All medical and travel expenses associated with a live donor transplant are covered by the recipients insurance.
If someone would like to be tested to see if they are a viable candidate, the person volunteering under their own choice, and who has an o+ blood type, must contact Kyle Broadwell
I'll post updates when they happen.
If you want to visit or send anything there are a few things to consider.
Please don't send flowers, balloons, stuffed animals. Intentions are well but I have no way to bring those items back with me and will end up getting tossed and I'll feel bad.
Don't send food. I never know what type of diet I will be allowed on any given day. I really don't want to stare at some pizza as I ponder what type of mystery mush I have to consume today. Not to worry, as soon as I can I'll be grabbing some authentic local delicacies, guaranteed.
Absolutely no surprise visitors. Please call ahead. Things can change so rapidly you could potentially waste a trip. If you are sick or even around someone that is sick, stay far far away. A tiny cold for you could be potentially serious for me.

Because my cousin Kyle has alpha one antitrypsin deficiency I am going to go get tested to see if I am a carrier or have it myself.  I grew up with Kyle and his sister.  We went to school together.  I detest being so far away from him right now.  Blogging about it is the only way in which I can help.
If you, dear reader, could possibly be a match and want to donate please call the above number.

Update...I'm sorry to say we weren't in time.