About time I post an update!

Christmas was great! My lungs, Thomas and Mack are doing wonderful! I have 98% lung function the last time I went to the doctor.

I'm no longer taking Lovenox injections (blood tinners) because I'm taking Coumadin (pills) that I swallow instead. Which means no more giving myself those painful injections! Sometimes they feel like a wasp sting, other times I don't feel a thing. But last time I had my blood work done, it showed that my blood was too thin, so I had to stop taking the blood thinners for a few days, then when I started taking them again, I had to decrease my dosage by 1mg.

My kidney function is still declining, so the doctor decreased my Prograf, my big anti-rejection medicine, to 1mg twice a day. He said that Coumadin can cause the level to be decreased. And my Prograf level was low when I had my blood checked, but he didn't change the dosage. I guess he is hoping that the decrease in Coumadin will increase the level of my Prograf. And is trying to save my kidneys since all the anit-rejection meds are hard on your kidneys.

And so now, everytime I'm home, I stay hooked up to my feeding pump. I do feedings during night and during the day I increase the drip rate and do water all day. When I want to go outside or go somewhere, I just unhook from my feeding pump and do what I want to.

Only thing is that my PEJ tube (feeding tube) hurts all the time still. He doctors say that some people's bodies just can't tolerate the tube and are more sensitive to it and have to get it changed more often, and I'm apparently one of them. I just had it replced about 2 1/2 to 3 weeks ago. When it gets to painful to bare, I'll go back and have it changed again.

Bugs Bunny (my female black and white regular rabbit) and Rex (my black and white male mini rex) had a litter of kits (bunnies)! There are 7 all together. Some of them are rare colors! They have all their hair and opened eyes. I bet in a few days they will be hopping out of the hutch into the main part of the cage. They will be ready to go to new homes the first couple weeks of Feburuary. Bugs had 2 blacks, 1 seal brown that is very friendly and nosey, 1 brown and white, 1 tortise and white, 1 tortise, and 1 orange and white.

Been trying to get a hold of the farrier so he can come out and trim some horses hooves for me so I can ride. Well, so I can ride as soon as the ground gets better, right now its standing water and mud everywhere!

We had snow during the very first weeks in December! I even made a snow-cowgirl, LOL, she had a big belt buckle on and everything and 2 horses, lol, albeit plastic, hehe. Her eyes were made from skittles and of course the traditional carrot nose. She melted very fast and was gone the next day, as was all the snow. We never get snow way down here in South Texas on the Gulf! We ended up getting 1 1/2 inches I think. My brother lives in an apartment in Beaumont and they got 3 inches. Houston got 5 inches! And there is a town in Laouisana thats not far from me that got 8 inches! Crazy weather!! I mean, we have got snow before, but not this early in the year. Usually its like Christmas Eve or Day or around New Year's Eve/Day. And never this much! Last time we had snow like this was in 2004, I got to make a small snowman then too, lol.

Buzz wasn't sure about the snow. He is my Mom's 4-5yo Parson Jack Russel Terrier. He kept jumping in the air trying to catch all the snow flakes before they hit the ground. And while walking in the snow he was looking at the snow before each step he took and would then look at his paw to see what the weird stuff was, LOL. Harley, my little chihuahua mutt dog, didn't get to see the snow. I let her outside, but all she wanted to do was come back inside and never even noticed the "white stuff". I even had a cute little doggy sweater on her. Me, I was in my barefeet and PJs, LOL. I didn't stay out there very long either, lol. But, it was like 4am too, I was sleepy!

Our Christmas Tree is coming this weekend Mom says.

For Christmas we had deep fired turkeys, Dad fried them outside! Yummy! We got one and gave one to our brother to take home.

I made Mom a picture frame of Buzz. I painted paw prints and dog bones on it and glued a small wooden dog in the top corner and painted his name at the bottom, and put a picture of Buzz in it. I also made her a blanket, one of those polar fleece blankets with the tie-ends. Her blanket has dogs on it with brown bottom. She also got the DVD's One Missed Call, The Dark Knight, and 1 or 2 other DVDs as well. She also got a new hair dryer and kitchen stuff.

Dad, I got him a camo baseball cap, jigsaw puzzle that has 2 doe's and a buck in it, and I made him one of those tie-end blankets as well. His blanket had John Deere Tractors on it with a browon bottom. He got some hunting stuff and some more guy stuff, lol.

For my brother, I got him a new Fujifilm green camera, axle/bod body spray, tuperware set, and I made him a tie-end blanket as well. His was blue striped with grey bottom. He also got some colthes, and he made it into the 4 year RN nursing program at Lamar, so Mom bought him a lot of school supplies and put it in a box and wrapped it.

I also made my Mom's boss a blanket, his is Reversible, it has UT Longhorns on both sides, but different designs on each side.

I also got some material to make my own, lol. Its pink cameo and the bottom will just be hot pink. LOL.

And I got material to do my best friend one next year for Christmas. I would have waited, but you never know, they maight not have this material in this design next year. I also plan on doing one for both my Aunt's next year for Christmas too, and it shouldn't be hard to find them a design/color that they will like.

My bathroom still isn't done yet. But hopefully soon! I want to do it in cowgirl/western theme, but not having much luck finding stuff to match it. My bed room is lavendar and the main back wall is lavender and ragged with regular purple color and country white celing. The bathroom will be a light beige color with country white or off white celieng, so that anything will match if I decide to pain my room again. So far I have all purple towels and wash clothes and hand towels and I got 2 lavender purple rugs for the floor. And I have a western mirrow. The frame is wood and it has brands going all around the frame. I need to find a western toliet paper holder, western towel holder, and western toothbrush holder. And a shower curtain. I saw a clear shower curtain with a barrel racer on it in black, that I wanted, but I can't find it now! And I need to pick out curtains for the small window. And if I find a western/horse decorated cover for the light switch, that would be cool, if not I'll just put a regular white one from the store on it.

But I also have a lot of butterfly pictures and stuff that would look great in there.

At the same time, I don't want it to look to childish either, lol, cause I'm an adult, lol. Not some bouncy teen.

And I had to buy a new sheet set for my queen sized bed. I only had one sheet set for it so far because its fairly new. I just got a new bed, my old bed was full sized, so everything I had was for a full sized bed and they didn't fit the queen sized bed or the deep pockets of it either. Well, so I only have a lavender sheet set for me bed. Well, my feeding tube came apart from my PEJ tube and all the tube feeding went all over my bed and stained my sheets. So I washed them and most of the stains came out. Then the very next night, my PEJ tube insersation site leaked a lot and left a small stain on it. So I again had to wash my sheets. So I was looking foever for a set of lavender sheet set for a queen sized bed with deep pockets (17-20 inches) between 300-700 thread count and couldn't find anything but statin sheets. So I looked at my comforter and it has an olive color in it and so does my decorative pillows and curtains and my bed skirt is an olive green color. So I stared looking for a sheet set in Olive green. Well nothing said Olive green on it. Except for some waterbed sheets that I did end up buying for my parents waterbed as they were on sale, along with a sand colored waterbed sheet set for them. Finally I came across 3 sheet sets, one said Dark Moss, one said Sage, and one said Pale Willow. I picked the Sage sheet set. I hope it matches the green thats on my bed and curtains!

Then someone sent me message saying that she found a lavender sheet set on Ebay and bought them and is sending them to me! I think they are 1200 threard count. How sweet! I told her not to, that it was okay, but she insisted and did it anyway!

Then I got a box from FedEx and thought it was my weekly shipment of medical stuff for my port-a-cath. Turned out to be a very pretty butterfly purple quilt! On the bottom is horses in different colors. It was made by a group of 9 people from horsecity.com and sent to me when it was finished. I had no idea about this until I got it in the mail!

For Christmas, I got a puple proclein piggy bank! I told my brother to get me one, I didn't think he would find one though! I didn't want a plastic one. He got it, then painted flowers and butterflies on it and on its right hip he wrote "hope". So I named her "Hope". Dad put a clear coat of something on her yesterday to keep the paint from chipping off. I love it!

My parents also got me a new laptop! But it was a lemon, so we had to send it back. Mine was custom made, so they have to start another one from scratch and with the holidays won't be able to start on it until Jan. 8th and said when its finished they will over-night it to me at no charge. They are going to put in a faster modem and a Blu Ray DVD player in it this time though!! Yay! So I'll be getting a better laptop than the orignail I got for Christmas!

I also got a LOT of other things. I'm very spoiled. I got the DVD's Wall-E and Horton Hears A Who.

I got Harley and the other dogs all a rawhide pig ear for Christmas, lol. Got Harley and Buzz each a new squeaky toy. Regular beef puperoni and chicken puperoni. And my brother got those pre-made plastic stockings for animals at walmart, one for the dogs to share and one for my Cat, Molly. And I got the horses a 4lb sack of Dumor's oatmeal, honey, and molasses horse treats. And the rabbits got some carrots and horse treats and a mineral and salt block. The dogs and cat seemed to like the horse treats as well, lol. Harley also got a new dog bed, because Buzz messed her dog bed up, so her old dog bed is outside. Was going to go in the trash, but now my cat Molly thinks that its her bed and loves the thing, so I guess its hers. I also made Harley her own blanket and I even crothed (stitched) her name into the bottom corner of the blanket. She is spoiled. And she got a new sweater to keep her warm. I even read the dogs the book by Dr. Suess How the Grinch Stole Christmas, and Buzz actually paid attention. Harely didn't give a care, lol. Buzz though, he even looked at the pictures, I guess because its a kids book and onlyhas a few senteces on the pages and has big pictures to look at.

Oh, and Mom also got me a GPS, a Garmin 200 nuvi, its in color. so hopefully I won't get lost as much, hahahaha. Which means I won't call my parents crying saying I'm lost and have no idea where I'm at, LOL. Or hopefully decrease those happenings, hehe. I used the GPS the first time, its easy to use, but on the way there it didn't talk to me, but on the way home, I must have pushed something becuase now its a woman's voice talks to me and tells me where to turn, lol. Scared me when it first started talking, lol. I need to read the insturuction booklet.

Last time I went to the lung doctor he said becase of the nausea and Gastropareisis and nothing working, that there was one option that I might consider. Its a surgery that would remove part of my stomach and stomach nerves, sorta like a gastric bypass. So I saw my regular GI doctor and the GI surgeon. Now I have to go back to my lung doctor to hear what the results are and what they think, what options I have if any, and what the plan is if they have one. I hope they at least have a suggestion on something I can try to make the PEJ tube more bearable and not bother me as much as it does. Hopefully something. It will be disappointing if I have to drive all the way there and back (making between 4 1/2-6hr) driving time total depending on traffic, construction, weather, if its rush hour or not, etc... and they don't have anything to offer me.

I have a visitor!

His name is Igor (pronouned eeee-gore). LOL, isn't he freaky?! He is life sized too. He stands 5 feet and 7 inches. He is staying at my house until he is repaired, lol. Igor belongs to family friend, Dr. Nick, his house was damaged from Hurricane Ike and Igor got broke. My dog Harley is going nuts and refuses to go in the kitchen. Some protection she is, LOL. Igor's owner has had him for years and keeps him in his house all year round, not just at Halloween, haha.

Harley wants to take a nap, she is curled up but keeping a very close eye on the creep in the kitchen and is fighting going to sleep. Well, thats it. Mom just made it move and Harley is freaking out and says "thats it I'm never sleeping again"

My j-tube is still causing problems. It hurts and it keeps getting hard to use. So hopefully when I see the doctor Tuesday in Houston it will get fixed or something.

Mom just finished washing my truck. It hasn't been washed in a long time and had a lot of dirt on it. So its all clean now for the trip to Houston. It will rain now of course. You know every time you wash a car it rains. And its supposed be a high chance of rain Tuesday too.

Winter is coming and the time is changing. Its getting darker earlier and the nights and mornings are crisp. The horses are starting to get their winter hair and starting to "fluff" up. The horses are really enjoying the cooler weather, they are bucking and running and snorting.

I'm 25yo!

My 25th birthday was Oct.6th! YAY! It was great too!

We are finally done with hay season! Our hay barn is full of wonderful smelling hay!

My Dad disc'd up my riding spot, it still needs more work. The grass is already starting to grow back. But its been raining the last 2 days. So now its a lot of standing water and too wet to disc it now.

Also been messing around with Alleyway. She got exercised the last 2 days. But I'm not sure if I'll mess with her today its so muddy out and still a light sprinkle. The mosquitoes are coming out in full force it seems because of the rain.

I've been shopping, messing with horses, playing with new kitten Molly, going to movies, etc..

Molly is a mess! She is about 3 months old now. She is very playful kitty. She would rather play than be held and cuddled on. She plays non-stop with my dog Harley. Its funny watching them play. Harley thinks that Molly is her pet cat. They are comical.

I'm doing great! There was a mistake with the insurance company, but its all fixed now. My J-tube is bothering me again. And my right lung has been feeling plugged up and "rattle-ly" and sometimes when its like that, in that area I can feel where the gunk is and have a little bit of lung pain there. So I'm doing breathing treatments. Hopefully it will work.

My brother is seeing the cardiologist Monday. To get his heart checked out for defects and stuff since cadio problems run high in our family and he was born with a chest deformity. His left side of the rib cage sticks out farther than the right side. Its only noticalbe to others if its pointed out to them.

Post Hurricane Ike update

Hi all!

I've been very busy so haven't got to update in a while. So this will be a little long.

We have had a lot of storms lately. Gustov and Ike. Ike damaged a lot of things. Mom and evacuated from Gustov but we all stayed home for Ike. Didn't have a place to go with all the horses and Sioux was sick.

Some how Sioux also got a cut during the Hurricane. Shortly after the storm passed our vet came out to my house and laid Sioux to sleep. She is now buried and resting forever peacefully in our hayfield.

Sioux is very missed by my family and myself. She was 23yo and was with us for 14yrs. She gave me MANY wonderful memories and 3 babies. I still have 2 of her colts.

My cousin had an accident while playing and fractured his head and hurt his shoulder and leg. After giving everyone a good scare, looks like he will be just fine and not need any surgery. They are still waiting on more tests to determine if he will need surgery to stabilize the fracture in his head.

Hurricane Ike really hit hard here. Lots of people lost their homes. The curfew here was just lifted today, almost a month later! The surrounding towns still have a curfew.

I went to McDonald's the past Saturday and all they had was french fries, coke, and hambugers with nothing one them. It just came with meat and bread, lol, no special sauce. No pickells, no mayo, mustard, or ketchup. Nada. So I went to Sonic instead and got a hamburger, tater tots, and Dr. Pepper and slit it with my Mom. Which ended with me only eating one bite and getting nauseated so my Mom ate it.

We have been cutting and baling hay for almost 2 weeks now! I hope we get enough hay to get us through to next hay season. But it looks like we will have to buy some hay.

My brother's car he was buying. It caught fire yesterday while it was parked in the parking lot of a hair solon place. It had some kind of leak. The engine and battery and other things in it melted. So they had to load it onto a trailer and haul it to the owners. Which, normally is just about a 2hr drive one way. Well, it turned into a 5hr drive the way there and the normal 2hr drive back. I think they had problems getting it loaded and then had to drive slow and I think they had to stop 1-2 times to fix it or something.

Also Bugs and Rex aren't both male bunnies like I was told. Pretty sure Bugs is going to be a momma soon. So I got another cage and have seperated them. Should find out anytime or up to 2 more weeks to see if Bugs has babies. I also got her a nesting box, for just in case she is pregnant.

I got a kitten! We aren't sure if its male or female. But we think its a girl. So I named her Molly. She will be fixed once she is old enough. Molly is very playful and likes to play rough. And jumps all over Buzz, the dog. They play until Buzz gets tired of her. She doesn't know to run away from dogs or horses, so I have to keep an eye on her.

Last weekend I gave PacMan a bath. It was hot and I gave him the bath in his paddock, so I didn't tie him up to dry afterwards. Just turned him loose, so of course he rolled and got all dirty. I was hot, so I didn't get the knot out of his mane. I think I will get it out tomorrow. Its a small one so won't be hard to get out.

After we are done getting the hay up, Dad is going disc up and drag my sand so that I can start riding again!

Forgot to add this

Little update~ The Critical Care Solutions main office in Houston just called. They just got the orders faxed to them from my transplant coordinator. Ramona, my nurse will be coming Monday to draw blood from my port. Ramona is my home health nurse, she is a RN. So I won't have to worry about getting blood drawn. I just have to get the x-ray and PFT scheduled. I was just told by nurse in my local doctor's office, that I don't have to schedule the xray, I can just show up any time that the radiology outpatient department is open and give them the orders then. I have to have the PFT scheduled in advance though.

And I forgot to tell you about this.

Last Thursday, Mr. Curley McCarey passed away. I found out when I got home from transplant clinic. He was 92yo and a great horseman, he gave me lots of good pointers and advice! I used to ride my horses down to his house and he and his wife, Mrs. Shirley, let me use their arena to practice and exercise in. His funeral was Sunday, 2pm, at Claybar in Orange. My parents went, I didn't go as I was having nausea and dry heaves yesterday.

After everything was over yesterday. Dad went back to Pat and Debbie McCarey's house (they live next door to Mr. and Mrs. McCarey). Mr. Curley is Pat's father. And Debbie is my NBHA's disctrict Tx 26 Director. She had some gifts for me that were sent from other of our Tx26 members for Christmas for me. One was a breast collar, with cowhide and crystals and barrel racer conchos, it was purchased at the benefit auction and playday they held for me and the lady that ended up getting in the auction gave it to me. Another member handmade a sign, like a welcome sign but it says "Alleyway" on it, the name of my paint mare, its made out of wood and paint and is really pretty with the bible verse: Phil 4:13 in the bottom right corner. And Pat and Debbie for Christmas went on a vaccation to Las Vegas to the NFR, they watched a few rounds of the NFR and got me a t-shirt from there that says NFR Thomas & Mack (I named my lungs Thomas & Mack after this NFR arena). Debbie was just now able to get them to me, as they have been dealing with health issues their selves and with Mr. & Mrs. McCarey, and then I had my own health issues going on.

My digatal camera is on its last legs, it doesn't work more than half the time I use it. So not sure if I will get pictures, but I'm going to try to and will post them. I will be getting a new digatal camera from my parents for either my b-day or Christmas this year, thats what my Dad told me.

Update

Sorry for not posting in a while. I've been busy and posting here got pushed aside. So this one will be long, sorry.

I went to Beaumont a few weekends ago. Went to Target and got a few books and a DVD and a few gifts. Didn't stay long and look at everything I wanted to though. I was having dizziness problems which made me nauseated. I felt like the room was spinning and wanted to black out once, but didn't thankfully.

I have stopped taking the experimental shot. And since then, the dizziness has stopped, so I'm thinking it was a side effect of the shot, but who knows.

All 13 of the horses were de-wormed and recieved their WNV (west nile virus) vaccine. That is all of them except Nacho that is. He is warry of Dad (all the horses associate him as the "bad man" cause he gives them shots, trims their hooves, etc.. he never catches them to pet them or give them a treat), so he knows something was up and refused to be caught. I'm going to try to catch him this afternoon, keep your fingers crossed! After he has been chased around by Dad, I'm sure he is going to be leery of me and hard for me to catch. Usually I can catch him easy.

Nacho, by the way looks fantastic! He is in a really good stage right now, just his head/neck look a little off. But his shoulder, hip, and underline look awesome! He is going to be stocky when he is grown! Right now it looks like he could use some exercise though, he is a little over weight. I'm not to concerened with his weight though as I know as soon as he hits another growth spurt he will lose a little bit.

I had transplant clinic last Thursday. Blood work was normal. Prograf level was a little low, so the dosage was increased to 1.5mg twice a day. Lung function was 94%. The 6-minute walk, I walked over 1400ft. My heart rate while walking got faster than I would like to see. It got up to 148 bpm (beats per minute).

Dr. Harish said that I could try a major surgery to fix my nausea. But I'm not totally convinced on this idea yet. I know my body can't take a major surgery like this one so soon yet from my last big surgery. I'm not sure of the name of the surgery, but its sorta like a gastric bypass surgery. They will remove the part of the stomach that controls the nerves to the stomach. And was told that then I wouldn't have any nausea, would be able to eat, and eventually have the feeding tube removed. But this brings about many questions. Its not a quarentee it will work. Recover will be hard. I'll have that horrible NG tube down my nose (I hate NG tubes with a passion).

I'm not sure how it works, because people that have gastric bypass surgery get gastroparesis from gastric bypass surgery. But he said that since they remove the nerves that I wouldn't get it. I still don't understand that.

I know I don't want gastroparesis when it was bad like I had right after transplant and for up to 4 months after the transplant before it let up enough so I could go home, I don't want that again! So I'm cautious with any surgery that pretains to the stomach, worry that it will mess with my gastroparesis or make it worse.

I have lots of research to do before I say no or yes to this surgery. And I need to talk to my gastro doctor, as Dr. Harish doesn't know all the specifics about this surgery since he is a lung doctor.

This coming Monday I have to have more labs drawn, PFT, and chest x-ray done locally. This ought to be interesting, haha. I'm not sure how the lung transplant center is going to set it all up locally when they are in Houston and don't have priviliges to any of my local hospitals, unless they fax/mail me the orders, but then I would still have to secdule the appointments for xray and PFT. And I'm not sure where they do it locally to draw from a port, they don't draw from ports at the local draw site. I think I'm just going to go to my local general doctor and have him give me orders and his nurse set up the tests, I think that would be easier. Then get the results faxed to the transplant center.

I have to see the transplant clinic in 3 months. As long as I don't have any lung problems, I don't have to have another bronch until next year, sometime between May-July.

The horses are doing well for the most part. A few of them I think get a kick out of making me worry, lol.

Harley is well, Harley. Which means she is a pest as usual. She is a rat terrier/chihuahua mix and is full grown, she weighs about 7-10lbs. She thinks she is the biggest badest dog ever. So I have to pay close attention when there is something she can reach. She eats everything and eats it like she is starved! Last night I put a banana peel in the trash, she knocked it over and then ate half of the peel before I could get it away from her. She also will try to eat non-edible things. She stole and ate my multi-vitamin and calcium medicine once, and another time she swallowed my nexuim capsule. I can't leave anything in her reach, everything has to be high off the ground and where she can't get to it as she will jump on things. Like once to get on the table a kitchen chair wasn't pushed under the table, so she jumped on the chair and then onto the table. In the living room she gets in the recliners and then on the end tables to search for food, as well as getting on the coffee table. I think I'm always saying "Harley, no!, Harley stop!, Harley, drop it! and Harley!" She will stop doing what I don't want her doing, but when she thinks I'm not looking or she will forget that I got onto her, she will go right back to doing what she isn't supposed to do.

LOL, but she does keep me entertained. When she wants to explore around the house, she brings me her favorite squeaky toy and drops it in my lap and if she has a rawhide chew stick, she will put that in my lap as well. Then she goes exploring. She thinks if she leaves her things on me that Buzz won't get them and I will protect or watch over her things and not let the other dogs get them. Its so funny. And she will come to me every now and then and make sure I'm still holding her stuff for her. If I have thrown them back on the floor, she gathers them up and puts them on me again. Or if I let Buzz get her stuff, she pouts and mopes around until I get them back for her.

Edouard - tropical storm/hurricane

Right now we are under a hurricane watch/warning. So far its a tropical storm but they are saying it has a good chance to become a hurricane one. And have to watch out for tornadoes.

So we have horses moved around. And anything that might "fly" we put in the horse trailer, like trash cans and such. The outside dog, Sparky, will come inside and go in the washroom and will sleep on some bath towels and rugs in there. He is scarred of bad weather.

I emailed my coordinator today, they still haven't gotten my blood lab results from last Monday, to see what my Prograf level is and check on my renal function. I still have some hard feelings with my doctor. He apolozied and I accepted, but the things he said was very hurtful. And one thing he said crossed the line. I guess I will just take it slow each time I have to go in and see the doctors, and I'm sure our relationship will be repaired slowly. Thats all I'll say on that matter.

I'm glad that I have my friends and Mom, since I feel that I can tell them anything.

Mom and I went to Wal-Mart today, I got 3 new books. That should keep me busy tonight since I'm sure I'll be up all night babysitting the horses making sure they are okay.

The weather channel is saying that we might get up to 8" of rain now, between tonight and in the morning.

So, to all my family and friends in the path of Edouard, take care and let me know your safe after the storm passes. Becareful of the tornadoes, as you know we live in tornado alley!

Candi