Out of the Hospital!!!!

Hey, it's Tanya here to tell everyone that I finally got discharged from the hospital today and I am now home!!! I was there a total of 52 days!!!! Ugh! It is sooo great to be out of there and back home! I'm exhausted though so I'm keeping this short. It's a lot of adjusting and organizing. Still have pain though it's lessened a lot and still on tube feedings. These will both improve over time and one day hopefully be gone. It's a long recuperating process so I can't go out and have too much fun yet but being home is enough for me right now. I'll be going to lots of doctor appointments and having a slew of tests every week for a month or so and then it will be every other week for quite a while. One of us will try to keep this updated on how those all go. Now I'm going to relax on my comfy couch!
Thanks so much to all of those who have given their support and best wishes! All of it has helped my spirits in such an emotionally and physically hard time.
Thanks
Tanya

Tanya's Lung Transplant 18: 9/23/09

Tanya's nissen fundoplication surgery was yesterday. They said she did very well, they only made one incision in the navel and made a good wrap around the esophagus. They also fixed her hiatal hernia and took out the bravo ph microchip that was still in her throat. The pain is excruciating. Her nurse thought she was supposed to be getting her pca dose of dilaudid every 6 hours, but it was supposed to be every 6 minutes, so she got very little of the pain medicine she was supposed to get. She's now on a clear liquid diet for a couple weeks, still being tube fed and it hurts to swallow. Apparently it takes time for the wrap to loosen up enough to be able to swallow solid food. She has been belching and regurgitating her pills, which we thought would be impossible after this procedure, but the doctor says it's okay, so I guess it's okay. We should be going home in a few days.

After the surgery

"Take one without the stupid pink pillow" she said

Small incision in the navel. You can see her tube feeding button right above the gauze

Tanya's Lung Transplant 17: 9/18/09

The bravo ph test results showed that Tanya definitely has reflux, but not an excessive amount. Now we have to wait, probably until Monday, for the G.I. surgeon to make a decision about whether to do the nissen operation or not. Other than the stomach issue, she's doing incredibly well. Yesterday she had the dressings removed from her sides where the chest tubes were and today the chest tube stitches were taken out. She has been walking 3 laps around the transplant section of the hospital twice a day, or twenty minutes on the treadmill.
Tonight she had her feeding tube clogged yet again by a hasty nurse who seems to be in too much of a hurry to do things right. When people don't take the time to crush the meds well and let them dissolve enough before injecting them into the tube, it gets clogged, and then they have to spend forever trying to unclog it. Of course all this time she's disconnected from her feedings, so her blood sugars get thrown off. On top of the clogged tube, this nurse bumped Tanya's nebulizer off the table and spilled all the medicine out. Then she said "I'll have to rinse that." Tanya's had several nurses of this exact type - they all have this "of COURSE I'm right, I know what I'm doing" attitude, and usually they say things like this while giving someone the wrong medicine, or the wrong dosage, or making some other careless and stupid mistake. Sometimes it's hard to stay positive through all the incompetence, but it's important to try and remember all the things that are going well for us, when it seems like everything is going wrong.

Feeling better even though the pain still lingers

right side chest tube holes

left side chest tube holes and part of incision

raised incision - this was the side they reopened to go in to fix the air leak /pocket.

left side incision, chest tube holes, and pain patch under the tape

Tanya's Lung Transplant 16: 9/15/09

Tanya had another barium swallow test today, for the third time. It was supposed to be at 1:45, but it didn't happen until 3:00. There was also supposed to be a bravo test, but of course now that's not happening until tomorrow morning. She went 19 hours without tube feedings, and after midnight tonight, she'll be off them again until after the test.

Tanya's Lung Transplant 15: 9/13/09

It's been two weeks since Tanya got moved to her new room, and her progress has still been good. She has been very physically active and her spirometer numbers keep going up. The only thing she's connected to now is the feeding tube, and the GI doctors won't do her nissen fundoplication surgery until she does a "bravo" test, which is scheduled on Tuesday. They have been giving us a hard time about getting the nissen surgery, saying she "doesn't need it" or something, even though it's pretty obvious that she's been aspirating contents of her stomach into her lungs.

Some transplant photos.

In ICU doing a breathing treatment while my Dad wipes off my head

Right side incision. Look how skinny and boney I look!

Doing treatments again. Notice all the wires going to my chest and the lines going to my jugular.

Left side incision and dressing hiding my chest tubes

Part of the family. Me, Uncle Ronnie, cousin Lyndzy, her boyfriend, and Aunt Linda

In lots of pain in the ICU. Watching over me is my wonderful Aunt Linda

Still in ICU battling a few setbacks and lots of pain. Glad I had family around to be there with me.

Tanya's Lung Transplant 14: 9/4/09

Monday Tanya finally moved into a new room on the 8th floor, the transplant patient section. This was also the first day she walked outside her room. Her progress is very good, still with a 5 out of 10 on the pain scale, but she's had one of her drainage bulbs removed, and the other one will be taken out soon. Yesterday morning was kind of an off time, because her heart rate was slightly elevated and her microspirometer results were a bit worse than the day before, but by the afternoon she was feeling better. This morning she had a bronchoscopy, which is just a simple procedure to examine the inside of the lungs and remove any excess fluid. The procedure went very well. Every day she does better on the incentive spirometer, which measures lung capacity, but still needs to cough more. Now things are really moving along and she should be getting ready to go home in a couple weeks.