Busy Day

Chris had two appts so he's gone all day. Sold a $13,000 job and is on the way to his 2nd appt. at 5:00 for flooring.
Woman came to pick up the Cusinart coffee maker I listed on Freecycle.og. No show on the mattress so I have to relist it.

Made stuffing and a pot of potato soup, in the new crockpot, along with some peach and raspberry filled filo for Brye who is really sick with the flu.
Watched some Supernanny & Storage Wars episodes while doing a few loads of wash and cleaning up the kitchen.

Breathing is not great today. Having to take lots of breaks even though I have the oxygen on.

Edit at 10:45 Chris sold his second job too. A $28,000 day! Woohoo! Windows and a French door on a front door appt. He came home with some great Alabama Sausage from the Conecuh Sausage Company, a cross and a box of Russel Strover.

Pulmonary Tests again yesterday

Over all most of my lung funtions are down between 14 and 18% since last tested in Sept.
I think the bronchitis last month pretty much did me in.
OLC is 51% Did 3 minutes of a 6 minute walking test w/oxygen and my SAT rate went down to 83. Oddette ordered me continous flow oxygen so hopefully I'll get the portable concentrator that Providacare keeps telling me they will get for me.
.
My new sewing/embroidery machine came in today! Can't wait to try it out tomorrow when I have some energy.
Got out of work at 4 and wanted to get Chris another birthday present but the people I ordered his CarGo desk from still haven't credited my checking account. Left a fairly nasty message again. The bank can't do anything to help. I should have used a charge card.

Put out the old Cusinart coffee maker for pick up. I listed it and the mattress on Freecycle. Chris swears no one will show up.

He is watching Bond movies yet again and I'm on here and playing Spider Solitare.

EDIT How could I not write about Christmas?

Worked until 4 on Christmas Eve. They gave me an Ipad Mini!!!! I was floored. Messed me up a bit though because I had Chris's Escort Radar Detector on hold at Best Buy. Didn't get my usual check so I had to borrow money from him to buy it.
Then the car desk I ordered isn't available until Feb AND they alreqdy took the funds for it so I'm totally broke and didn't get him another B.Day present.

Looked at a house on the 26th. Great layout but too worn. Stopped at Cupcake Coutour for a German Chocolate Birthday cupcake on the way home.

Chris, as usual bought me way too much for Christmas. A Kurig, two sets of pj's, a wonderful robe that is satin on the outside and soft furry on the inside.And the sewing machine.

Alida Knobloch

When I start feeling sorry for myself I need to think of this little girl.
She is three and has a service dog that carries her oxygen tank.


http://todayhealth.today.com/_news/2012/03/21/10780622-girls-best-friend-is-dog-who-carries-her-oxygen

Going To A Party

We haven't been out socially in so long I can't even remember the last time.
Tonight we are going to meet the people Chris works with. I'm hoping everyone will just ignore my oxygen tubing and not look at me with pity. I hate that.

Saw Chung last night and he gave me a big hug and wished me a happy holiday. I forgot to bring him the list of places he has to visit next month when he takes his sabatical before moving to Austin and buying a new house. We talked about how he understands why people want fireplaces even though TX is so hot. He talked about having family gathering around a nice fire at holiday time. I doubt he is Christian so I guess it is more the family togetherness.

Hoping Karen gets her licence fast or that Scott can fit me in on his schedule.
My hands were so tight last night that the needles bent when Chung tried to put them in nearmy thumbs. Had to actually pull them out hard at the end.

Spent the day being lazy. Watched recorded "Long Island Medium" until 10 when the guy from Airtron came to clean the A/C. Chris left at 12 for an appointment and I sat my fat ass in the recliner and watched "Undercover Boss", "Health Inspectors" and "Big Rich Texas". Hegot home at 5 and the remote sucked out of my hand and we watched "Scrooge" with Patrick Stewart.

Remember These Faces

These are just two of the faces of the little ones that were shot up to 11 times each last Friday!
Yes, a mentally unstable young man did it but he wouldn't have been able to had he not had easy access to assult guns!
What does anyone need a gun like that for? Hunting rifels are much harder to hide and hunters use them for a good reason but NO ONE should be able to easily (or un easily, be able to get guns!
The NRA supposedly has 4 million members but only 1 million Facebook "likes" which is supposedly a good measure of public opnion.
Every member of the NRA should be approached by a crazy with an assult weapon and then lets see how they feel about making them so readily available.

My heart is bleeding for those babies and their families. We need to stop assult weapons from being so easy to aquire.

Margo Bought Me A Christmas Moose!

I love it! She got one at Pier One and I just love it. Stopped at the store on Bandera last week but they didn't have any then I forgot she told me they had them at a store on 281. Today she got me one.
He makes me smile.
I keep saying I don't want more "stuff" but I love him.
Margo buys the best gifts. She has given me my favorite blanket, a great frother that I'd still be too cheap to buy even though I love it and now Mr Moose.


Wicked time breathing today. Have had to use the oxygen all day.
Took the boys to Gymboree then came home to pick up Christmas lights for one of the girls at Gymboree.
Delivered the lights then back to the house to say hi to mom before she went to work
No nap but watched "Up" to calm Nathan down. He is like a hurricane lately.

Home to wait for a guy who is supposed to pick up the big storage bin that Chris had in his truck. Talked to his son who is in FL. Dad was supposed to be here around 6:30. I figured 7:30. 10PM and still not here. Going to bed in a few.

Forget Gun Control ~ Outlaw Gun Ownership!

Skyped with Gareth and AEmilia. I miss them so much.

The little girl who was one of 28 killed in a school shooting on Friday in Newtown CT looks just like AJ and I can't get her face out of my brain.
I keep having crying jags which make me choke. I feel so bad for all those families.
Everyone who belongs to the NRA should be shot and then lets see how much support there is for letting people get their hands on automatic weapons.
Guns need to be outlawed.

Not A Bad Week

Gymboree on Monday and Wed. Was offered a front desk job after my transplant if I'd like.
School on Tues & Thurs. and brought the boys home to decorate the tree on Friday. I love those babes. They keep me laughing.
Saw the corner of Babcoak and Fred three times this week.
Picked up Hooters wings on Monday (crappy) Went that way on Tues to go to Sears Ingram to get a tree and Wed came home on Wurzbach after seeing Chung.

Still coughing like a maniac and needing my oxygen but I feel better than the last few weeks.

Packed up the houses for the kids. Have to get them mailed.

Sitting tonight for Margos Christmas party. Home just before midnight.

Rough Night

I have to get some sleep that doesn't involve being up every few hours or just happening when I am totally exhausted.
Went from chair to floor to chair last night. Found out the alarm rings for just over two hours. lol

I started some wash, cleaned up the kitchen and brought all the Christmas houses in from the garage. Have to box them up to send up to PA and to FL for the babes.
Have to get to the store and return the pillow covers I bought. They stink so bad. Also have to return the razor Tope bought.
Need to buy a lap blanket, some new shirts, salt for the softener and some containers or baskets for organizing.

Movies to see:
The Guilt Trip
and Parental Guidance
his Is 40 ~ but some commercials look good, others horrible.

I Need To Write Notes

to my babies. I feel like I HAVE to let themknow how much I love them and I;m sorry that I can't/couldn't be with them more.
I know they won't remember me because I don't even remember Grandma Anne well and she died when I was 13. I just doubt I'll make it until any of the little ones are that old.
AEmilia and Gareth are so sensative at times. I hate when Ann gets loud with them. It really seems to scare them, I never want them to feel fear about what they are doing.
Miss Megan will probably never remember me at all. She is so happy and so sweet. I hope it continues that way. Bran is so great with her but the problems she and Jay have about her not going back to work right away may cause big problems if Jay doesn't grow up real fast.
Ari and Ev will still have Chris to be a great grandpa for them. I wish the other kids lived close enough for that but I doubt they'll see him after I'm gone, He barely gets to see them now.
Oh well, it is 1 AM and I need sleep not morose thoughts. I just miss them all so much right now.

Finally Feeling A Little Better

I think the "flu" or bronchitis or whatever may finally be going away. Finished the antibiotics on Monday and not dragginf quite as much.

Tope is in Corpus for the week.

Lost my brakes on the way home from the boys school so Danny came home and let me find a place to get the car fixed.
Made it to the Goodyear on NW Military and they checked it out, Aparently my left front brake line rusted through and they have to fabricate a new one because Cadillac isn't making the part available anymore. He could get the left side but that one looks fine,

Car still wasn't done today. The boys and I used Danny's Tahoe to go to my house to pick up my checkbook and charges and go get the car seats. Brye picked me up from work and will help me out tomorrow, We both have appts. with Rao at 10. Mine for my INR hers for results of her head CT. Danny will take me tomorrow evening to get my car.

Hard Week

Still sick so I called Odette on Monday and got another script for Ampicillin. Thursday appt to check my INR (2.29) but she thought my lungs were crackling so over to Baptist for an x-ray. Walked in as they called Backer.
Brye and I went for coffee after my xray and her head CT.What a pair...
Met Chris at aIPAC on 410 and wanted to just lose it on the way home. He was going to buy a Caravan. Can you say "Mom Car" Hated it. Couldn't get into it without pulling myself up. Better than the Journey he liked but not by much.
Dragged through Friday. Thankfully he went looking at Gunn GMC and bought a Terrain. Nice vehicle. Fully loaded and they gave him $16,000 for the truck. Cut our payments in half. and got a nice vehicle.

Spent today dragging around the house.

Super Lazy Sunday

Slept until 10:00 then until 1:20! I can't believe I did that. I'm am dragging so much!
Got up, took a shower and came downstairs to plant my ass in my recliner.
Looked at Pinterest and BC for a few hours each. I pinned a bunch of things I'll never get around to doing but it makes me happy to have the collection to look at.
I REALLY need to start sewing again. We need to move so I can get my stuff organised and out of boxes.
Read a bit of "The Woman Who Went To Bed For A Year". Cute book.
Ate more leftover turkey then brisquit for dinner. Roasted some olive oil potatoes for Tope. Made a great latte with the frother Margo bought me. Coffee, pumpkin spice and cinnamon.
Have to call Odette tomorrow for different antibiotics. This one isn't working.
Watching NCIS instead of the football that has been on all day

Walgreens

to pick up Musinex(sp?)Zyrtek, Stetson and some chocolate, $81 later I stopped at Starbucks and spent another $10 for a frappe for Tope and a pumpkin latte for me. I must be losing my mind to throw money away like that but I feel like crap and don't care.
Neighbors to the right have a beautiful sparkley yard
to rival what we usually do and Tim & Tanya have a "Tiny" blow up Christmas dog. It can rival the real Tiny!

Chris wants to get a Christmas tree even though I want to skip it this year. He said I could decorate it any way I want and he won't give me a hard time. Mom agreed with me... he thinks I'm dying. The boy does not give up the remote or the Christmas tree without a fight. lol

Ok Thanksgiving. Found a new hospital to use.

Christa made a great ham, potato, stuffing, green bean dinner. Brye made her cucumber salad and I roasted a turkey upside down. Great gravy drippings. Will do it that way again. Pie for dessert.

We finally convinced Chris to go to get checked out around 4:30, after he moaned and didn't get up out of his chair all day. He kept saying he didn't want to ruin our day but it was obvious he was in a lot of pain. We were ALL frustrated with him

I was still wheezing pretty bad so B took him. She was looking for the TX Med Clinic she said is on Westover Hills. Not sure there is even one over there. Found a new Baptist Emergency Hosrital on 151 that opened last week.

They did a CT scan of his upper body and he just had a bruised chest and enflamed tendon in his elbow. Ro's boss couldn't give him the day off so they bathed the kids, took showers and left about 7:00. B had to work at 4AM so I went looking for the hospital. Home around 8:00.

Spent today doing nothing but looking at BC and Pinterest and playing Spider Solitare. Chris talked to the insurance company.

Will life EVER calm down? I want to have a major breakdown but if I cry I'll choke to death. And I wish I was kidding.
Tomorrow has to be better.

Adding pics I like...

Can It Get Much Worse?

Started out an ok day. The cortisone shot helped the lungs a bit and I'm not wheezing. Took the guys to Gymboree then came home, put them in for a nap, straightened the kitchen then Danny told me to go home. Off Friday and maybe watch the kids one night next week.

Stomach flu for Chris and he totaled the car on the way home because of it. He canceled his last appointment and was on his way home because he kept throwing up. Made it almost to Braun and totaled the car. Pushed one guy into another and neither car had much damage at all. No tickets. Probably because he was hurt. Nice people all around.

Christa and Ro had taken the Caddy to HEB and I was watching the kids. They came home and Ro and I went to get Chris. Ro was great and loaded and unloaded the truck. Don't know how all that stuff was in the Fit.

Got home where Chris couldn't stop throwing up. Need to get the carpets cleaned soon as he couldn't move from his chair. He refuses to go to get checked because he says the flu will confuse the results. Not happy about that at all.

Saw Odette (Mark's PA)

I have bronchitis. Got a shot in the ass and a script for a 7 day antibiotic Levofloxacin 500mg. Wheezing ang coughing away.

Stopped at the Sears office to pick up the rest of the mac and cheese from the Thanksgiving lunch.
Went to the Helotes PO to visit my miserable clerk Sonia (and mail to Ireland and San Diego) over to picked up script at HEB then got home maybe two minutes before Chris whose 1 o'clock appt. was a bust. Waste of gas to go over to 35.

Fell asleep until 3:30 when Chris left for his 4:00. I'm just so much fun to be around lately.

Facetimed with Meg. Too cute.

Made stuffing because I'd done the bread last week before I knew Christa was cooking.

Skyped with Ann, AJ and Gareth. AEmilia read "A Path In The Forest" to me.

The shot is helping. I feel a little better.

Still dragging. Poor Alex barely lifted his head off the couch today and Nathan seems a bit better but still has no energy. We were on the couch watching The Polar Express and Nathan was sitting to my right. Alex was next to him and sort of kicked him. Having no energy Nathan watched then quietly said to me "Miss Cyn, look at what he's doing." No arguing or wrestling around. Just no energy. I feel so bad for them. They have never been sick before and this thing is just kicking butt.
Poor Margo had to work on a new system. She said they were backlogged 400 films. Danny went to the store then to the Ronald McDonald House, where he was supposed to volunteen today but he just couldn't. Everyone spent the weekend on the couch.
Margo texted me at 9 and told me to take tomorrow off. She is working 1 to 9 and Danny will watch the boys in the afternoon.

Danny let me leave when he got home at 4 and I've planted my ass in my chair and barely moved except to make mac & cheese for Tope to take to work tomorrow.

Talked to Ann today. Æmilia wants a village for Christmas so she will get the houses and Gareth will get the ships and lighthouses. The other things Gareth told Ann he wants for Christmas are applesauce and Cuties oranges! lol

I just hope Brandy doesn't change her mind about wanting my "clutter" for Megan.
Doing pretty good at clearing out my extra "stuff."

Gotta do a will even though I have nothing. The girls know that but it will make probate go faster if I have one. Took a picture of all my watches and jewelry. None is worth much but I put names next to each one so Chris will know who gets what. Kathleen is the only one who I have nothing for. Æmilia, Megan, Ariana, Evelyn, Emma and Abby get the jewelry and their mom's get my watches. Buying another cheapie diamond ring at Kays tomorrow so each granddaughter has a ring from me. One more to go to have enough. I love anniversary rings. Wish they'd do one more squared off or emerald cut.

On another note I did a "Long Island Medium" marathon. (Woohoo no NCIS for a day or so) Sounds crazy but recently I've seen both Deb and Grandma H who have both told me they are here but it's not time yet. Maybe it's because I've been so sick.
Ok back to LI Med. I told Chris I want to make an appointment for him (or me if I'm lucky enough to be here) in about 4 years. He doesn't believe in it but I told him I'll have her mention something he couldn't deny was from me. I've also told him I'll static up his football games if I can. lol Have to find the boy a new wife so he isn't alone. I love that man and don't want him to be lonely. He thinks I'm crazy. Maybe I am but it's better than whining and complaining.

Think I'll add a pic so I have something to look at when I review this missive.

Lay Down Sally

Chris asked me to make some CD's of James Taylor so I can have my favorite music when (if) I get the lung transplant. I'm saying it's my funeral music.

I've always said I don't want a funeral. I want to be cremated and made into a diamond ($4500 average) Well, I suddenly remembered I forgot to include some Eric Clapton. Chris responded "What do you want? "Lay Down Sally"? I can't stop laughing. I adore that man.

Nathan shared

So sick I can't keep my eyes open.
Ate lunch and threw up big time.
Dizzy. coughing, sweating and freezing.
Danny, Margo and Alex are sick too.

Went to the dry cleaners at 3:30 and they didn't even ask if I needed help. Carried it out for me.
Dragged my body into Hobby Lobby and bought Megan her "1st Christmas" ornament. Jason was born Jewish but doesn't practice but he likes the celebration of Christmas minus the religious part. Kind of weird but ok...

Chris had two sales then a cancellation. Home ten seconds after I was. Wonderful man kept me covered while I was freezing.

Did a little more research on Mixed Connective Tissue Disease. Can I find much more to be wrong with me?!
Deb was in my dreams last night. I told her I wasn't ready quite yet and she said she's be waiting to help. Weird but sort of comforting I guess.

Good week but dragging today

Nathan threw up last night and Lucas was sick too. I think they gave it to me because I ate dinner then threw up. Not fun.

Went shopping last night and got a turkey and lots of fruits and veggies. Going to make roasted veggies and some puff pastry desserts for the weekend.

Chris has been out SO late. Almost 1 AM on Wed. 11 on Thursday and 9:30 tonight and nothing is selling.

My damn car keeps needing antifreeze. Going to have to do a radiator transplant soon. lol Phone keeps saying No Service or Emergency Calls Only AND we thought the coffeemaker died this morning. Turns out it just popped the outlet. Chris picked up a new Cuisenart brewer and grinder at Costco.

Read a whole bunch on lung transplant. If I had $225,000 I could buy new live donor lungs through a company in Sun Valley CA. Says donors are from foreign countries. How sick is that!?!? Take advantage of poor people whose countries don't regulate transplantation.

Told mom what is going on and she went out and signed a donor card. Poor thing is SO worried about me. I feel horrible, Christa told me she fully understood my situation but it didn't hit her until she and Chris talked about it on Wed. so she spent the night crying. I feel so bad for them to be that worried for me. I don't know what to say to make them feel better or not worry so much. Whatever happens happens.

this sucks, this sucks, this sucks, this sucks

Saw Marks today and got the official word that lung transplant is my only option. And hopefully it is an option.
They will check out my insurance and hopefully not get a rejection. The new super sized, super expensive insurance won't start until Jan. 1st.

Then it is on to the transplant team to see if I can even qualify. He says there will be a lot more medical tests along with them looking at our financial situation (not good due to tons of medical bills from Chris's back which was the result of that damn accident... I wonder if I can shoot the ass who hit us) making sure I have support to get to appointments and I get to see a shrink to make sure I have the right attitude and will comply with all requests. Then they will determine if I can get new lungs.

My weight and financial situation are hinderences but my age, activity leval, wish to keep working and attitude are on my side.
Chris pushed a bit and we got the answer that without a transplant my prognosis is 2 to 3 years. I refuse to accept that.

Dr Levine (who is patient rated the highest along with Marks) is who I will be referred to if the insurance approves San Antonio for the transplant. If not Dallas or Houston may be a possibility. I HATE health insurance companies can control needed care.

Talked with Sharon and told her what was going on. I figured I had to be totally honest because she knows enough to know if I'm hiding stuff from her. Going to go with the "I need a transplant" without the "without it I have only a few years to live" with everyone else. Hopefully they won't figure it out. I hate to stress the girls. They don't need to worry.

I just really want to make this easier on Chris. Gotta find him a new wife. LMAO He thinks I am kidding, I am but I;m not. I love him and want someone to take care of him when I am gone.

On a lighter note, I maxed out my debit card and bought a Naturaworld pillow for $60. It feels like down but is latex filled. Praying I can sleep in bed and not wake p hacking away from using down pillows. A new mini comforter is next... Maybe I'll make an anti-die quilt. lol

Forgot to ask Brandy about Jasons interview.
Ann is supposed to upload pics from her camera to the computer but hasn't done it yet. I can't wait to see the kids dressed up for a wedding.

Christa, Ro and the girls are coming for Thanksgiving. Ro is bringing a ham he got from work and we'll probably order a turkey from HEB so I don't have to cook. Making dressing and mashed potatoes wheather I feel like it or not. Going to get one of those great apple pies from Costco that Greg bought us last year. Adore that guy. He is so sweet when he comes over. He always asks how I am and is truly concerned.

Dragging BIG Time

Did a test, I slept in bed last night and shouldn't have. I think Marks is right about getting rid of the down pillows. Woke up with tons of flem again.
Coughed my way downstairs and then collapsed in the recliner.
Brye came over just as I finished losing my mind. We planned to go to Magnolia Haus for breakfast.

Great breakfast. That place is fantastic. Had to wait for almost an hour and, of course, I brought the oxygen tank that was only half full so rather than going to Target when we were done we had to come back to the house for oxygen. Can't walk around without it anymore unless I go at a snails pace and I can't risk my SAT rate going down as much as it has been with the least little activity.

Came home and decided we'd take a little nap (she's been working like crazy lately and didn't sleep well last night either)
Woke up at 3:30 and Brye was gone. She had to work at 6:00. Called her to apologize for falling asleep. She said I was snoring like crazy which I do only when I'm really tired.

Chris got in at 5:00 and then had to run out for a 6:00 appt. He is dragging big time too. Iced his ankle for a bit and then back on the road again.

I know Marx said I'd have flu like symptons from the Reclast but this is kicking my ass big time.

I REALLY need to get out and get some stuff for BC. Need a TX postcard, TX ornament and some greeting cards. Being so fatigued is a royal pain in the ass.

I keep thinking of all Chris has been doing for me and I have to get more energy so I can do for him. The poor guy is working 12 to 16 hours a day 6 days a week. I know we need the money but he needs things to slow down so he can heal his ankle and recharge.

Talked with Brandy and Jay has a second interview for a transfer and promotion. Looks like Dallas, Houston or Pheonix might be a real possibility for them. I'd love to be able to see Megan easier.

Ann, Glenn and the kids are in DC this weekend. Dr. Uncle Mike is getting married and AJ and Gareth are in the wedding. Waiting for pics.

Reclast Infusion

Had the Reclast infusion yesterday morning and today I feel like I have the flu minus the congestion. Dizzy and ache all over.
My INR was 4.6 so I'm off the coumsdin for three days. They called in a new script for me to Medco.
Bruises are almost gone from the surgery.

Chris is in Corpus for a few days. Sold a $17,000 kitchen remodel last night.

Talked with Sharon and she gave me the number for a respritory rehab program at Baylor that is supposed to be one of the best. I'll talk to Marks about it next week.

Seeing Rao on Thurs after I FINALLY have the Reclast infusion at Marx's office that morning. I have to remember to ask about the weird blistering.

My left nipple is still hurting. I think maybe Malve hit a nerve when he did the biopsy. The incision is healing wonderfully. Hardly hurts at all but my nipple is killing me.

Didn't sleep well again last night. Up from about 12:30 to 2:00. Up at 7:00.

Chris had a 10AM appt then home to watch football. 5PM appt. near home and off tomorrow. He saw Stanley and is in a walking boot for 6 to 8 weeks for the tendopothy in his right ankle. Paced too much in sneakers while I was in the hospital.

I talked with Miss Æmilia and she was concerned that I'm still working. She asked how I was feeling and I told her I was fine. She replied "Grandma, I don't believe you." I adore that child. She is so adult it is funny. I miss her and Gareth so much. I wish they lived closer or that we could take living in PA.

Danielle is coming on Tuesday; maybe... she texts me at least three times changing days every time she comes. I think it is funny. I always tell her just come when you can. I don't care as long as the dusting and vacuuming gets done every few weeks.

here is a picture of Miss Megan that made me smile today:

The boys and I voted on Wed (Obama) so we don't have to worry about that this week.
Halloween wasn't as much fun as usual because I didn't have a stash of kids books to give out. I have to start collecting for next year.

Spent the evening on the porch giving out candy to little princeses and super heros. Also watching to make sure that Mr Pediman (Jay from across the street) didn't show up. That man gives me the creeps.

Good week but hard day

I had a really good week. I'm off the Lovenox again. INR is 2.3 but my ankle is a mess from dropping an almost empty jar on it. I can't believe how black and blue it is.

Had a very hard night sleeping. I took 15 mg of Norco which should have made me pain free and sleepy but it didn't.

Got out of bed at 8:30 with a headache and alternate between the sweats and freezing. The bottom of my feet are even wet and it is 73 degrees in here!

Also getting those weird leg blisters again but in a higher place on the inside of my left calf. Bigger than before with some little tiny ones pluse my regular spot just above my right inside ankle.

I really feel horrible today. Weak and in a bad headspace.

Some links for UIP & what's next

http://www.nhlbi.nih.gov/health/health-topics/topics/ipf/
What Is Idiopathic Pulmonary Fibrosis?


http://www.med.umich.edu/whp/information/autoimmune-
disease.htmAutoimmune Disease: A Range of Discriminating Illnesses

An interesting Lupus blog
http://lupusgirlblog.blogspot.com/2009/02/this-new-lupus-blog.html

http://www.surgical-pathology.com/usual_interstitial_pneumonia.htm

http://www.umm.edu/news/releases/transplantable-lungs.htm

The next step is for Marks to talk with Marx and Rao. The prognosis doesn't look good. Malve talked of lung transplant but said there was a lot to do before that point. Number one not getting sick and then losing enough weight to even be considered.

Scares the heck out of me but I just have to keep going and pray for the progression to slow down.

Pathology Report

At low magnification, the main change in sections of the wedge lung biopsy is chronic intersititaal pneumonia characterized by a combination of inflamation and fibrosis. At least focally the fibrosis predominates and has a somewhat patchy distribution. It also includes areas of architectural distortion in the form of subpleural honeycomb change. While the fibrosis consists mainly of dense collegen depositions there are scattered fibroblast foci. The combination of findings establish the diagnosis of UIP. An unusuure feature is the presence of lymphoid hyperplasia in the form of peribronchiolar lymphoid aggregates. This is a relatively nonspecific finding although it is seen more commonly in patients with underlying systemic connective tissue disease compared to patients with idiopathic pulmonary fibrosis. In a sense this finding is consistent with the patients history of mixed connective tissue disease.

Dr Jeffery Myers at the University of Michigan Dept. of Pathology

After surgery supplies

I need to remember to suggest to Dr Malve that he reccomend cheap Fruit of The Loom sports bras to any big cheasted women that he does lung biopsies on. They absorb the sweat and don't pull too bad on the gauze and they hold the breast up enough to help with the pain from the weight of the breast.
I swear I'd be more comfortable if I was flat cheasted.

Reminds me of not being given enough practical information for dealing with Chris when he had the hardware put in his back. No one tells you the things you REALLY need to know to get by day to day and not have to be running to the store or medical suppy place just to survive the days after a surgery.


The staples are still hurting which kind of surprises me. I'm usually much better with pain but I'm still often between a 5 and 6 when I inevitably forget to take something for it. Last Lovenox shot stung like crazy and bruised up bad.

Slept for quite a bit of the day while Brandy straightened up the house and did lots of wash. Hung the old curtins for me so we don't have to do it when we move.

Chris had an 11 in Dripping Springs and a 7 in San Antonio. Came home inbetween for an hour or so. Evening appt. was a bust too. They had less than an hour available to get a quote on a kitchen remodel. People are weird.

Bloodwork at Rao's

Doing better today. Saw Dr Rao. She was not happy that neither Malve nor Marks consulted with her before the biopsy. I'd called her office the day it was scheduled to let them know and to change my next appointment but she doesn't have that in her notes.My INR is 1.6 so I have to stay on the Lovenox for the full ten days. Seeing her on Thursday after staple removal.

She also said that because she was away when I was first started on the blood thinners there were tests that should have been done beforehand but now we'll have to wait until I'm off the coumadin ~ probably in about 5 months. Two tests were run for abnormalaties but both came back negative. I have to ask Chris if he remembers exactly what she said about that.

Stopped at Whole Foods. Got a great cup of coffee and picked up some Indian take-out, chips, a sandwich for Tope, pickles and some good cheese for Mom, who isn't coming now because she couldn't find a ticket for under $600.

Also stopped at Copenhagen to show Chris the chairs I like. He didn't like, or I should sa, doesn't think I should get the one I'd like.

Home to play with Meg and a nap for him since he didn't sleep well last night.

Margo read his MRI. No tear but some tendonopthy and bursitis.

MRI

MRI for Chris's ankle. So frustrated I could scream. Between that and the non help today. I'll ask Margo to read it.

Brandy helps with what she thinks we need not what we say we need or ask for.

We eat wrong. Wheat rolls bought because they are better for us. They'll go into the garbage. I shouldn't use milk in a recipe that calls for milk because it is bad for me. No coffee, it restricts the blood flow.
I shouldn't wash my hair in the kitchen sink where i barely have to bend over. I should contort myself to do it in the bathroom.I kept having to ask for more shampoo because I was using too much. Actually I shouuldn't be doing it at all. So what if my head itches from five days of sweat. I want to sob because NOTHING I say makes her happy.
Chris dumped the Perier water because it was flat. Shouldn't have done that.
We have a lot of alachol in the garage fridge. Ice cream too!


Having someone help is great if they can get you what you ask for or do what you need done but hesitating because what you ask for is "wrong" is just too frustrating. Easier to be alone and cope. I've made all but one meal since getting home. Chris cant walk and moans constantly. He offers to get up but moans the whole time. He won't see a rhumotologist even though Dr Curtis told him his shoulder was probably destroyed because of RA (and most likely his other tears of tendons were a result of something like that too. He tears too often from doing NOTHING.

Long Day

Brandy is really helping us out. She went shopping tonight and then made some great salads. It is so nice to have Megan here. She is constantly happy and laughing.


Talked to mom and Sharon. Mom is probably coming next week after Bran leaves. Ann and the kids are coming after Dr. Mikes wedding on Nov. 10th in DC and staying for Thanksgiving.

Really tired and needing pain meds today.

Black & Blue!

My arms are a mess. The nurse who got me ready for surgery couldn't get the IV in then the one they put in my right arm went bad. Then the new one in the left arm fell out. What a mess. On a good note the Lovenox shots in the stomach don't seem to be bruising so bad this round.

Hmmmm

Apparently I was coherent enough to make a journal entry but I don't remember doing it or getting out of bed on Tuesday at all. .

 I was moved out of the ICU around midnight and over to what they called a step down unit on the 4th floor. Had a roommate who has diabetes and had a liver infection. She went home on Wednesday. Her name is Sharon and she calles her liver Cynthia. LOL

Chris, Brandy, Megan and Brye spent most of Wednesday with me and I remember little of the day. I do remember my 3rd IV fslling out in the morning and I refused to let them put in another. Got 10mg of Norco around 10AM and another 10 in the evening. Nothing for pain on Thursday because it only hurt when I moved.

Saw both Malve and Marks on Wed (don't remember Tues at all) and they agreed I could stay until Thurs to get some good rest. Great bed that allowed me to sit up and sleep. .

Little bit of a rough night. They moved someone in at about midnight and back out by early morning. Of course they turned on all the lights and the tv. Even the Norco didn't keep me asleep. .

Released around 2:00. Chris dropped me off and went to see Dr Stanley. He probably tore his achalies tendon. So what's new... Spent the afternoon sitting outside listening to Brandy tell me I HAD to keep my oxygen on even lf my SAT rate was 99.                          

Had the biopsy

Dr said my lung looks abnormal but that is what he expected. Pathology reports in three to six days. I hurt like crazy. Morphine ever two hours and still in ICU on Tuesday night. I was ok until I got up to go to the bathroom. Now I hurt all over.

Quiet Sunday

Surgery tomorrow.

Brandy is here with Megan.  Chris's appointment ended up being canceled just as I was turning out onto 1560.
Poor Megan HATES the truck.  Too loud for her.

Chris and Brandy went shopping and I had Megan asleep on me when Tanya came over to borrow an egg.  Her kids LOVED Megan and stayed to play.

Brye stopped to meet Megan.

I wish Brandy and Chris would stop telling me to put my oxygen on.  I hate the damn canella and I'm fine when sitting still.  I just want a little time without the plastic up my nose.  Making me a little crazy.

Biopsy on Monday

We're tentatively scheduled for 2PM on Monday at North Central.  Pre-op at 10 AM.  Still waiting for insurance approval as of 4 yesterday.  Hopefully BC BS won't stall like they are on the Reclast.
Brandy and Megan are coming tomorrow afternoon at 12:30.  It will be wonderful to be able to hold Megan because I obviously won't be able to after surgery. 
I got big hugs from the boys yesterday.  They are SO excited about going to Disney for the week.  It is going to be hard not to see them for two weeks.  They keep me smiling.
Went shopping last night and got new pj's that I can hopefully wear at the hospital after ICU.  I HATE hospital gowns.
Going out to breakfast with Brye at 9:30 this morning.

Saw Mathai today

Flu and pertussis shots and she checked me for diabetes because of the steroids and weight gain. All is well.
Stopped at Marx's office to check on the Reclast infusion and was told BC BS is stalling the approval.  Like I would have a useless procedure done just to waste their money!?!?!?!

Have to call about getting a portable oxygen unit for just in case we lose power over the recovery period.  Don't know how my lungs will react to no extra oxygen.

Pissed that I didn't hear from Malve's office and when I called at 4:00 the surgery still wasn't scheduled yet. 

Stopped at Copenhagen on the way home and looked at chairs I can live in for recovery,
Found one I love but it is $795 and the ottoman is another $295.  Not now.

Walked in on Chris talking to Brandy.  She is coming on Tues and apparently AnnMarie is coming the following week also.  I love that they want to be here but they really can't afford it.  I hate to cost them money even though I'd love to have them here.

Romes for dinner because I was too lazy to cook.

Saw The Surgeon

Spent three hours talking with the surgeon, Dr Malve, and now Chris finally understands why they may never know the reason or cause of my lung issues,
The fibrosis is the end stage of whatever is going on with my lungs.  The Lupus or whatever ever connective tissue disease I have may or may not be causing the lung issues. The doctor said that it could be my lungs are just super sensitive to some allergen, Possibly dust from bird excretion. Which is really weird.

The biopsy will at least give us a new starting place for future treatment or it will tell us that we just have to treat the symptoms until I can lose weight and be put on a waiting list for a transplant.

We are trying to schedule the biopsy for Monday or Tuesday so I can be home for the weekend and then hopefully for just another few days. I HATE taking time off from work.  Being there keeps me going.  I can't sit around the house all day and vegetate.

Not looking forward to the pain but it will be worth it if we can get answers.
Rather than using a scope it will be an open lung biopsy because then he doesn't have to collapse the lung.  It isn't as ideal as the other because he can see less of the area he has to biopsy from but since I am on oxygen already it is his only choice.

He stated that of all the surgeries he does a lung biopsy scares him the most because of the complications that can develop.

Good but long day

Chris ended up working most of the day.  Home at 7 but he made a $13,000 sale.

I watched Ev while Ariana went shopping with Christa and Ro.  We watched some tv together.  Earlier the girls rode the plasma cars for quite a while. 57 degrees out!
Came in and Facetimed with Brandy and Megan.  Meg was SO tired.

Ro brought the rest of the stuff down from on top of the pool table, dismantled the twin bed and threw away the mattresses and moved the queen bed into the guest room.
Nice to have a guest room again.

Used my oxygen almost all day.

Cooked a bunch and the girls made cookies while Ro grilled.

Ms. B came to visit.

Had to pick up more of the Lovenox, another $1700 billed to BC/BS. Asked the pharmacist about the bruising and he said there is nothing I can do about it.

Did my good deed for the day and met a nice neighbor, Angie. I saw her walking on Culebra on my way to get the script and was surprised to see her on 1560, near the creek, on the way home. I think I scared her a little when I stopped to give her a ride but it was hot and she was far from home. Turned out she lives at the corner. I gave her my name and number and told her to call me any weekend when she needs a ride.

Christa ", Ro and the girls came for a visit. Ro moved all the packed boxes for me. Would have taken me all day.  It is so nice to have the girls here. 

Chris picked up a pulse oximeter for me when he went grocery shopping on his way home from Wimberely (Pleasanton this morning) .  My SAT rate stayed up in the high 90's if I wasn't moving.  Down to 92 climbing the stairs and 87 after a coughing fit. 
Made mac salad, hot dogs and beans for the kids, at their request.

Got my car inspected on Thursday night and Moses, the manager was asking me about my oxygen.  He said his sister, Melissa was diagnosed with Lupus this past week. Her symptoms sound a lot like mine.  She is on oxygen, has 45% lung capacity but  is not doing well.  Supposedly the doctors will tell her what her prognosis is later this week.  He is so worried about her.  I promised to call her and offer any support I can.  I called and left a message, inviting her to the Better Breathers Meeting on Tues. but I haven't heard from her. 

Went to see Rao and had more blood tests. My numbers are not coming up to where they should be. Doubled the Coumadin to 10 Mg a day. Stay on the Lovenox until I see her next Monday. She says she won't bill me for that appt. More extensive bloodwork on the 18th at 9:45. Finally talked to Marks and my pulmonary tests show I'm down to 53% lung capacity. Diffusion rate is 26% Referral to Dr.David Malave for an appt to talk about lung biopsy. Wed. at 1:00. Margot is working nights.

Really frurstrating day

I went to PT and it felt SO good to actually exercise a little but it sure didn't last long. Ten minutes on a stationary bike and I had to keep going slower and slower because my SAT rate kept dropping under 92.
Next was 10 minutes on the arm bike which I love, then ten on this machine where you lay on your back with your feet up against the wall and push your weight up while raising your arms above your head. I loved it and it was just too darn easy and my SAT rate was ok so I asked to stay on it and have a little increase in weight.
Had to stop after 5 minutes because I dropped to 83. Therapist couldn't believe I wasn't feeling my lungs stress but it was no worse than walking upstairs. Actually a lot less strenous.
I was advised to buy a pulse oximeter and use it often because obviously I'm not listening to my body enough. I am so damn frustrated I want to sob.

Called Marks's office to get the results of my last pulmonary tests and to find out the status of the lung biopsy and haven't gotten a return call from him or Michael. Will call again tomorrow.
Talked to Sharon about dietary restrictions and she said that yes, I can eat dark green veggies I just can't stop (or start) eating different foods suddenly because it will mess with the meds. Consistancy helps. I see Rao on Thursday to see how I'm doing with the Lovenox and Welfarin. My stomach looks like someone beat me.

B's Moving Day

Spent the afternoon and evening helping Brye move. She finally has almost everything out of our garage. I kind of forced the issue of all the stuff in the garage because I really need the room to put the boxes I packed in preparation for our move.

till haven't found a decent one story house but I'm hoping it is real soon. The stairs are my downfall. I can be relatively ok just puttering around slowly but the stairs do me in every time. It's gotten to the point where I avoid them as much as possible.

I went on Freecycle while waiting for Brye to come over and I looked at all the "Wanted's" I offered all the baby stuff including the high chair to one person and some DVD's to another but no response yet.

Went online when I got home to find out how to stop bruising from the Lovenox shots but it seems like the sting and bruising are inevitable. Started the Coumidin today too. Left ankle still swelled. Stomach a mess again. I thought that was not going to be an issue after going off the Plaquinil.

Brye's new place has a pool practically right outside her door and it is really beautiful for an apartment complex. She said she'll give me a key so I can exercise there rather than having to join a gym. I'm going to take her up on the offer.

Chris was in Austin and Killeen today. Came home with a fever again. Had one on Wed. night/Thurs. morning. Hope it has nothing to do with my white cell count and platelets being up.

Well I managed to copy and paste my medical history from the last year but for some reason it is all one big mess. I added breaks but they only show up on the edited version. When I publish they disappear. Still haven't found the spell check which I need because my typing is so bad. Gave myself the third Lovenox shot and now my belly is bruised. Margo said I probably did it too close to the skin. No call back from Marks today so I'm still not sure if the lung biopsy can be scheduled for the week of the 15th. I really want Mom and Sharon here if possible. It will keep Mom sane and not worrying and Sharon can handle the staff at the hospital.

Spent The Day Gathering Notes

Oct 20th traveling to Atlanta got sick and was diagnoised with Pnumonia on Monday 25th. Z pak and prendisone.

Dec 5th still not feeling better went to an emergency clinic and was told I had pneumonia.Bought a new nebulizer for liquid abuturol. Given a stronger antibiotic and more prendisone. Was told to see a pulmonologist. Still sick and hands blue (Renyaulds according to Dr Mefford) made an appt with Dr. D'Avignon. Had pulmonary tests done and CT ordered, told to see a rhumotologist for suspected Lupus. Made an appt. with Dr. Emily Marx for Jan.

Full physical at Meffords on Dec 31st.

JAN 2012 17th Saw Dr. Marx. ana markers high for Lupus. Got shots in hands for pain. Put on plaquinil an anti malaria medication. 18th hand xrays bad arthritis at base of thumbs. Still having problems breathing but can't get a call back from D'Avignon. Called on Thurs (19th), no return call over weekend called on Mon. Told he'd call on Tues. No call from him but office called and said he'd call on Wed. Thurs had argument with receptionist. She informed me I should NEVER expect a doctor to just call and I should have made an appt. (I'd tried but they'd said they couldn't fit me in!) Was told to call my GP or go to an ER. Wrote a nasty letter and delivered on the 27th and just kept my next appt. because I couldn't find anyone to see me sooner.

Saw Dr Marx inbetween and she asked what D'Avignon said. He always asks what she said. Don't they share noI feel like notes!?!? I feel like no one can help. May need to find another pulmonologist. Feb 1st Saw Dr Greiner to rule out a heart issue. EKG, Echo and bubble test. Was told all is well with my heart.

Feb 6th inally saw D'Avignon again and he reccommended a right heart cath as he said Dr Greiners results may not be comprehensive enough. Had right heart cath. All is well. Still not happy with not breathing well. Started Tessalon which helps with the cough but not the flem. Still on 60mg a day prendisone.
Dr Marx suggests cutting amount down. Had hard time getting oximeter to read as my hands were cold and blue.Finally got an 88 SAT rate before doing 6 min. walking test. Rate dropped to 83. Home oxygen ordered. Now taking prendisone, zyrtek,NAC and singular from Dr D'Avignon Imuran and Plaqunil from Dr Marx DiovanHTC, and Nexium from Dr. Mefford (Nexium upped to 2X by D'Avignon with Omeprozol 1x aday inbetween) Home oxygen delivered. Using at night and if I need to walk in a store. 2 canisters last 8 to 12 hours so I have to conserve at work for when I move a lot. Have one at the top of the stairs. Luckily I don't have to chase the boys around anymore. feb 14th started Imuran 3 a day feb 20th add 50,000mg a day Vit D then 50,000 once a wk for 8 weeks. feb 27th right heart cath

March 26th off Imuran liver problems according to bloodwork April 9th bloodwork better back on 1/3 Imuran will increseagain. April 16th Big change in eyesightsince Dec. Cut Plaqunil in half as per Marx. April 23rd flight to FL Flying with oxygen is a royal pain in the ass at the inspection. Had to get note stating I'd use it intermitentantly in flight. Didn't. Used in FL Unit weighs about 40lbs and is a pain to drag.

May 10th Chris had back injections on Brandy's birthday May 15th Finally gave up on D'Avignon and was able to get an appt. with Dr. Marks. D'Avignon is leaving the practice. We discussed my letter and lack of help by D'Avignon. Hopefully Marks is as good as he seems. My test came back a little better Lung capacity up from mid 50's to low 70's. Feeling a bit better but still coughing and lots of flem. Advised to use oxygen all the time. Prendisone stays at 20mg a day. All other meds stay the same. May 18th mamo all is well May 21st wrist shots @ Marx office Didn't work this time hands hurting like crazy again.

June 9th Balance Acupunture met with Chung Wu June 12th finally made it to a Better Breathers meeting and it was on feet! and walking. June 13th Chung 540 1st Appt IT WORKS!!!! I could start the car! Pick up milk. Sleep without crying that my hands need to be chopped off. June 20th Chung June 22nd Chung

July 1st Chung July 8th Chung July 18 I have bronchitis again Both boys have it. Pnumonia? Z pak Margo called in Had bone density test because of prendisone use. Have Ostiopenia. Need an infusion of Reclast once every two years. Need insurance approval.

Aug 29th More pulmonary tests. Down to 63% lung capacity and diffusion rate down a bit. Using oxygen every time we go out. Can't walk more than a hundred feet without being short of breath. Using more often at work. We tried to do a Roswell Alburqueque and Las Cruces weekend. Could not breathe in Albuqueque. Found out the elevation is the same as Denver where Dr. Marks advised me to NEVER go. Had wicked chest pain and had to use the oxygen on 3 constantly. Fractured a rib coughing. Margo did the xrays and ate the cost. PT ordered to teach me to exercise and still breathe. Useless!!! They want to strengthen my legs so I can walk easier. That isn't the problem. Lack of oxygen is! Going again next week but may not go more. $36 co pay isn't worth it.

SEPT Bloodwork at Marx office this month showed blood is clotting too much. Advised to see a hemotologist. Still waiting for approval for infusion. Saw Dr Roa. Had venous doppler.(Another $107) Clot in left leg. Put on Lovenox 2 shots a day for a week. then testing again. Also Coumindin starting Sept 29th. Rao was out of town. Sub. Dr was not very informitive. Margo explained reason for two drugs. Lovenox is fast acting until Coumidin kicks in. First shot I gave myself I lost half the medication on the table when I expressed air from needle.

More BS

I still have to do a medical history of the past nine months but I this week has been one thing after another. I went to physical therapy $36 co pay to learn to exercise and still breathe. I kept stressing that point and they just kept telling me I was doing great with the tests (stairs and a 6 min walk test) All I came away with was not to let my SAT rate drop under 90. It's usually at 88 with slow movement so that was useless. I saw Dr Rao a hemotologist and she had me schedule a venous doppler for this Tues. Got a call 10 min. after the appt. to see her today. I will go tomorrow before my appt. with Michael at Mark's. Office for more pulmonary tests. Margot says I have a blood clot behind my left knee.

Medical History

If I can figure out what I am doing this will be the place I can track just about everything that I need to in preparation for the lung transplant I will most likely need within 3 to 5 years.if things don't stabalize with my *&*)(%#&@@&() lungs.  Not a happy camper today.   Finally got my head around having a lung biopsy but not that I have what is called a terminal illness.

I;m on nightly oxygen and can't move at more than a snails pace without getting short of breath if I don't have it on but I'm still working and want to keep working as long as possible but it is getting harder every day.

Medical History

Born at 7 months but had strong lungs then.  Both parents smoked.  I never did.
At age 13 my Grandma died and my mother swore I was so upset I gave myself asthma.
Spent the next few years getting allergy tests and weekly cortisone shots that did little to control my breathing.
By age 20 I had an alburtol inhaler with me constantly but never thought it did much good.
Yearly bronchitis and one two ER visits for breathing problems but I swore never to go back when at about age 35 I was given 4 shots of adrenalin to get me to stop wheezing during an ER visit,  I left before they(Mather Hospital) could give me a fifth and make my heart jump out of my body. 
I remember a drug named Theofalin but no others.  I never stopped wheezing, 

At age 41 I got a divorce and moved from NY to GA.  My asthma pretty much went away.  Moving to TX a year later I was pretty much sympton free for many years. 
A bout with pneumonia at age 50 and then yearly bronchitis in the fall followed.
I was fat but had no other medical problems.  No hospitalizations.  No major illnesses.
Did have testing for thyroid problems after a complete physical.  I was exercising every day plus walking an hour a day and eating almost nothing but still not losing weight.  Final advice was to cut down to 800 calories a day and to keep up the 2 hours a day of moving a lot.  Didn't work. Gave up and stayed fat.

At age 54, on Thurs, Oct 20th we were traveling from TX to GA and I became very sick.  By the time we got to GA I was coughing constantly and spitting up flem.  Diagnosed with bronchitis,  Given a Z Pak.and prendisone by Dr Mefford in Houston.  Mentioned my purple fingers when  was cold.  Told it is Renyauds (http://en.wikipedia.org/wiki/Raynaud's_phenomenon ) and to keep my hands warm.

Dec. 5th I was still sick and after going to the eye doctor I went to an Emergency Clinic where I was Xrayed and told I had pneumonia again.  Was given a 10 day antibiotic, prendisone and liquid albutoral for my nebulizer, which of course I couldn't find.  Bought a new one.  What a waste of money.  Found out later with pulmonary testing that it did me no good.  (which is what I always believed in the past0
Was advised to find a pulmonologist because my fingers were purple.  Still couldn't breathe well so I made an appointment with Dr. Louis D:Avignon