Monday, August 18, 2008

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.

Monday, August 4, 2008

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

Friday, August 1, 2008

Finally an update!

A lot has gone on since my last post. But I should be back to posting regular updates now.

I recovered from the hysterectomy very well! No more of having to deal with those issues! Although I was informed that I did have endometeosis on 3 places and they left both of my ovaries in place. The doctor said years down the road that I could get endometerosis on the ovaries. But I will worry about that if that should happen down the road.

I ended up back in the hospital about a week after the hysterectomy with the stomach issues (gastroparesis) and having a lot of feeding tube pain. So since I'm always getting poked and my veins are used up the doctors put a port-a-cath below my left collar bone. They can give me medicine through it and draw blood out from it for lab work. Now I won't have to get my veins poked and give them a chance to heal up. I can have the port in for up to 10yrs before it needs to be replaced or just taken out entirely.

Then a few days later they changed out my feeding tube, to a new one. Its the same kind/type, the old one they say was still in good working order but they can cause some issues with pain and stuff when sediment from medicine and/or tube feeding stuff. The interventional radiologist was really nice and I trust him, he is very compasionate and caring of his patients. He said that I need to have my feeding tube changed out every 4-6 months, and if I don't then that will cause the pain and issues that I was having. I was orignaly told by my doctor that it would only need to be once a year to once every other year. So hopefully by going by Dr. Weiner suggestion and having it changed out every 4-6 months, I will no longer have feeding tube issues!

Then I went home. And the next week 4 of my horses had procedures done.

Cherokee~ regular standing gelding, coggins, teeth floated
Charlie~ gelded under general anesthesia, wolf teeth pulled (only had 1 so have to wait for the other to come in so it can get pulled out), and coggins.
Nacho~ regular standing gelding, coggins, wolf teeth pulled
Scooter Bug~ Cryptorchid gelding (under general anesthesia), coggins, wolf teeth pulled.

So had to nurse to them, give them their medicines, make sure they were moving/walking around enough to keep swelling down, watching for drainage/infection, and give them pain medicine.

The day after they went to the vet I went back to the hospital with nausea, retching, and a migriane. I stayed in the hospital for 7 days. I had first went to the local hospital, all they did was give a dose of nausea meds and sent me home while I was still dry heaving into a nausea pan. I didn't want to go to Houston, so I toughed it out that night and dry heaved all night and into the next day. Mom said thats was it, and she forced me to go to Houston Methodist hospital.

I was admitted, and not happy about it. I don't like going there because its so stressful to be there. Worring about my horses getting taking care of properly. Then have to worry about the nurse taking care of me, that she is doing her job right and giving me my medicines correctly. Having to tell every single fellow/resident that comes in the whole story of whats going on. Then when the doctor comes I have to say the whole story again. Whats the point of telling the fellow if I'm going to have to tell the doc anyway? And then sometimes when the fellow does speak out and say whats going on, they usually only get half of it right. Then I have to make sure the nurses give me my medicines on time and draw my blood in the morning on time.

Dr.S doesn't know what to do to help me get better and is tired of me. So he made accusactions that were wrong and he went about asking questions and saying things the wrong way. There is a right way and a wrong way to go about things. A few things he should not have said at all. He talked to my Mom the next day and she set him straight and he appoligized. But damage has been done. I can forgive, but not forget. All this did was stress me more.

After talking to a few of the nurses and the PA and the NP, I felt a lot better. And a lot of stress was relieved.

I had a new doctor come see me, he wants me to try this shot out that isn't FDA approved, so its experimental. Yeah! I'm a gunia pig again! Its a shot that I take just under the skin every 2 days. He wants me to try it out for at least a month and see if it helps with the nausea. Hopefully it works. It has some not so good side effects though. Like nausea, headache, seizures, and diahhrrea. Grrreeeeaaaattttt, LOL. But so far, no bad side effects happening!

They did xrays of my lungs and sinuses all were normal!

My lungs are doing great!

Ginger, Eno, and Dolly went to new homes almost 2 weeks ago. Ginger went to a little girl to use for a 4H project for halter and pleasure classes. Dolly and Eno will be pasture pets and stay together. I miss Ginger very much.

Dad gave me Turbo. And when I save enough money up, I'm going to send him to a trainer. He has to have his coggins, teeth floated, and get freeze branded before he can go too. And Mom gave me Nacho, I guess because he is Sioux's last colt and Sioux means the world to me and she won't be here much longer. And Nacho seems to like me best, I can handle him very easy, whereas sometimes it takes Dad forever to catch him, hehe.

So my personal horses are now: Turbo, Toast, PacMan, Charlie, Nacho.

And I can do anything I want with any of the others. Perks, Scooter, Shady, Alleyway. I'm going to finish Cherokee on barrels and Mom says she wants to start riding and barrel racing again and wants to on Cherokee. So after I finish him, she will take Cherokee over. It will be fun.

After I have paid for Turbo's training, and getting everyone the vet care yearly stuff they need, like wolf teeth pulled and teeth floated and coggins and freeze branding. I'm hoping to save up for my own 28ft gooseneck aluminin stock trailer, with a nose cone for saddles to go in and 2 center slam gates, with the rubber floor planks. No wood flooring for me! I'm excited, its going to take forever to get it though. But I can dream, hehe.

I'm doing good. I've been reading books lately. Mom and I have been passing them around. This weekend might go to a movie. One day I want to spend messing with the horses, can't do much with them still though as they are still recovering from their surgeries, but they can get a bath or get brushed. Depends on the weather, if it rains or not.

Well, see ya later. My new BLING headstalls just arrived! I can't wait to open the box! Its Cherokee's, Turbo's, and PacMan's gorgeous alligator and crystal headstalls. You can see them on www.trickedoutpony.com I got the red one, lime green one, and the purple one. The red one is for Cherokee, purple for Turbo, and lime green for Pacman. I might put up pictures later.

Candi