An Eventful Few Months

Sick all of Sept and Oct.  Finally, after two courses of antibiotics I agreed to go into the hospital for testing.  Oh yeah, had a second right heart cath the week or two before I ended up in the hospital.

Was put on Adcirca, which the insurance company spent months denying payment on.  My heart is finally damaged from the lack of oxygen.  Still no approval but we have new insurance so who knows...

Last PT session on Oct 24. When Ann had strep and I was finally convinced to go see Marks again.  Saw Heather instead.

I also saw Dr Saigal, a renal specialist, for the edema and he put me on Lasix up to three times a day.

Back to the hospital stay...

I went in on Monday Nov. 11th   Had a lung scope done on the 12th.  Met Dr Zajac, an infectious disease dr after they found three different infections and thought I may have aspirated something.  (Ya think?!?   With the way I cough and gag I don't doubt it!)

Then they sent in a gastric guy; Margo's cousin Dr Garcia.  He ordered a stomach emptying test to be done on Wed night then again Thurs morning, if I remember correctly.

Almost forgot; I had a cracked rib, from coughing.   Tests showed my stomach isn't working at all.  The juice I drank at 7 on Wed night was still in my stomach at 9 the next day.  

Susequent testing in Dec showed wickedly bad GERD and Barrets Esophagus (mom took me for that testing at NC Baptist). Garcia also diagnosed me, after a cpepcide test, with dysmetabolic syndrom.  Put me on Metformin and I dropped almost 20 lbs in two weeks.

While I was in he hospital Ann and her friends moved a bunch of stuff into our new cottage at Leon Valley.  Three garage sales in Oct and Nov grossed almost $3000.  We sold the pool table, fridge, Chris's tools, some dressers, the coffee table, shelves, the treadmill, camping and Christmas stuff, the patio set, rugs, tons of kitchen stuff, car stuff, the A/C we never opened and lots of little junk. AND we STILL have a full storage unit.  

Change of names

Miss Julianna was born on Friday at 6:01 but by Saturday Mom and Dad decided she looked more like an Avery Rose.  So welcome to the world tiny Miss Avery.

She checked in at just over 5 pounds.  5lb3oz and 17.5 inches long.  She is a teeny little one but strong.  Can't wait to meet her.

I had a wicked headache and fever all day yesterday and today isn't looking much better.

Marks finally called in the script for the nebulizer.  That, along with The Vest might make a difference.
Had the second right heart cath done on Thursday.  A little hypertension with exercise.  He will talkto orher pulmonologists to see if the Viagara is warrented at this point.  He thinks itmight be too much, too soon.

Feeling great!

The Vest is the best thing ever! I haven't had a wickedly bad coughing fit since I started using it.

Danny & Margo brought the boys over last night to join us for movie night.  Ann picked up Peter Pan.   A little chaotic because it was last minute but overall it was wonderful having all the kids here.
I miss my guys so much.

Gareth's Birthday

Warren is here for the weekend, he and akk the Beckers stopped over for lunch.  Glenn cooked.  They are now going to "the boots mall" then out to dinner with Johnny and family.
Gareth loved the book with the toys we got him.  Downloaded lots more games on the iPods and Kindle.
Making notes for my End of Life Directive.  Chris really wants to take the job as district manager for W TX and NM.  I am so afraid to even try going to a higher elevation.   Having more nightmares and night terrors.  It has to be connected but I can't seem to stop it. I am so afraid I'll die alone while Chris is away two or more weeks a month.  
The alternative to moving there is two small apartments.  One here, one there.  Lovely last year, living in a complex with noise and a parking place too far away to think about venturing out.  

Yesterday after acupuncture i stopped at B&N for Gareth's gift.  Supposedly had a half charge on the concentrator but it ran out 10 min. into shopping.  Used the charger in the car but not enough of a charge to keep it going to get into the house.  Brye was here and had locked the door.  I totally panicked when I couldn't breathe after wrestling the concentrator out of the car and to the door. Keys in purse under the pile of mail I was holding.   Scariest moment yet.

Told her about the job thing and she suggested us living together.  No way, no how.  I can't and won't ever live with her again.  She reverts to sloppiness too easily and I can' live with messiness I haven't created anymore.  She says she'll move back to UT if we move.  That may be best for her as maybe she can pry her brothers fingers off her inheritance and not have to work.  Told her to file for bankruptcy.  The courts will get her money for her.  Her brother is screwing her royal.  She lives in an apartment while her nieces and nephews get houses on her dime. Why she won't hire an attorney baffles  me.

Chris is on his way home early.  He set all the appts this morning.  Sold his 10 with a credit reject. 4:00 canceled.

Getting The Vest!

I thought I would be getting a script for use of the Vest at pulmonary therapy but I am getting one to use at home!  A nurse will bring it to me in a few days and show me how to use it.

I am SO excited.  No more having Chris pound on my back to get the mucous loose. I can use it twice a day for 20 min. Each time.

I also got a Simply Go.  Hopefully that will work out well.

Still don't know if I'm changing from Imuran to Celcept.

No word on another right heart cath or appt. with Dr G.

Great weekend

Great weekend so far.
Yesterday Margo brought the boys over and Ann brought the babes.  They played together really well and with LOTS of energy.  Gareth came over in backwards plaid shorts and a striped shirt (made me cringe! Lol)
Had a good talk with Margo.  They are putting the boys into 5 day a week school and Yolanda is going.  I kind of thought that might happen after seeing her with them last week.  She'd said she was concerned that Margo was upset with her and after watching her more with the guys I thought it might not be as good a fit as I hoped for.   Margo teared up about them seeming to need more "loving" from Yolanda. I just want to hug them all!  Especially Margo because I know how you can hurt for your kids not getting what they need.   I love those babes so much and the thoughts of them not being happy hurts.

We met Christa and Ro in Schulenburg and picked up the little ladies, who were maniacs in WhatABurger but were great on the ride home.  We stopped at Buckees for Dippin Dots!
Took them to see Planes today and $60 later (yikes) all are happy.  A snoozer of a movie.  Not half as good as Cars.   Swimming and the park tomorrow then a ride to Schulenburg and hopefully an early bedtime.

Saw Marks on Thursday

Might change Imuran for Cellcept.  Thinking of upping prendisone
Getting approval for The Vest.  Renewed approval for Pulmonary Therapy.
Talked about end of life directives and hospice care.
Also about a med approved for use in China which is in trials here.
I may try to contact Chung to see if he can help me get some from there.  Not sure of the legalities but what could they do to me?  Put me in jail and then maybe give me a lung transplant so I don't die there? Lol. Forgot to ask about medical mary J for cooking.
He said morphine when I need it but I really hate it if it makes me feel  like what i did after the lung biopsy.  Rather shoot myself.
Probably doing another right heart cath because of the chest pain I've been having. At least the last one wasn't bad.yeah, will owe Baptist yet another $2000 that they won't put on a combined bill.  More phone calls.

Odette left. Met new PA Heather.  Nice young woman.

He is also trying, yet again, to push for a portable concentrator.

Have to call him tomorrow to see how his personal life went this weekend.  His 26 yr. old cat is at the vets for transfusions and other hopefully life savings measures.