More surgery! Ugh!

Sorry I haven't replied back to everyone but I've been busy with family and Thanksgiving and currently dealing with some painful isssues. Had a great Thanksgiving with some of my family but started having some bad pain a few days later. Turns out I need sinus surgery and surgery to repair some kind of pocket in my throat that's filled with fluid or something. Not sure how or why this happened. So I go in Monday for surgery and stay Tue. for a bronch. Hope you all had a great Thanksgiving!

Lung Transplant Clinic Appt. Nov. 16th

At 6:30am, ugh! Weight is still improving. I was about 110! Unfortunetly, my lung function was down on all tests :( Ranging around 4-8%. So I'm getting a bit worried. The doctor said to keep an eye on it and we'll see how I do next appointment. I'm even more worried about my numbers now than I was before transplant. On top of my health worries, I have new issues I'm having to deal with right now that are really adding to my stress. My Dad's wife just found out she has stage 4 cancer and it's spread through out and somehow her other doctors had failed to have her tested for it or even mention it even though she clearly was in poor health and having lots of issues. On top of that there are other family, insurance, and other issues making my life even more stressful. Thank goodness my family is coming to visit for Thanksgiving. That will at least cheer me up. I'll post an update after next clinic visit in 2 weeks. I also have a bronch coming up Dec. 8th and The Lung Transplant Christmas Party Dec. 6th! Hope everyone has a great Thanksgiving!

3 month TX Anniversary!

A little late but On November 8th, it was my 3 month post Lung TX Anniversary! My lung function has improved a tiny bit hanging around the mid 70's. My weight has greatly improved, weighing around 108. My prednisone has been cut back to 15mg a day instead of 20mg. My Prograff levels continue to fluctuate so I still have to get blood work done for that every week. I no longer have to wear those annoying tight thigh high TED Hose for blood circulation / clots!!! Oh man does it feel so good to have those things off for good! I still have some wheezing and phlegm which bother me. Doctors don't seem too be too worried b/c my numbers are doing ok. Still on soft foods but able to eat a little more. Found out I could get down some lasagna and chips with lots of dip on them, haha. I did an interview with a nice lady from the paper in S.C. where my Aunt lives and I used to live several years ago. If you'd like to read it check out this link http://www.upstatetoday.com/news/2009/nov/11/tanyas-story-living-gift/

Bronch / TX appointment Oct. 13th

Had my bronch/lung biopsy done. PFT's very slight drop and there is an infection in my lungs :( Doctor said he got some junk out of my lungs. Got a chest x-ray afterwards and I guess after he looked at that, the infection didn't look as bad as he thought so luckily he only put me on an oral antibiotic for now! I have to wait for results on if there is any rejection and what kind of bug is infecting my lungs. Sure hope it's nothing bad and we'll be able to get rid of it quickly and easily!

2 months post transplant!!!

So on the 8th was my 2 month anniversary of my new lungs! My lungs are functioning around 70% which should increase over time. The doctors seemed pretty happy about it. They had to adjust one of my immuno-suppressant meds and my morning insulin b/c I was bottoming out too low. My weight is up to 97. So I still have some ways to go but on a good path so far. Before transplant, I was down to around 93 pounds and my lung function was in the 20's! Oh my oxygen saturation has been around 99 and even up to 100!!! Before TX, it was around 94 or less when I was even sicker.
On Friday I saw the GI surgeon who did my Nissen Fundoplication surgery. Didn't tell me much new but did take the annoying dressing out of my bellybutton! Yeay! Now I get to look at how gross it is, hehe. It hasn't even been quite 3 weeks yet so it should look a lot better over time. I'll share some lovely pics with ya, hehe.
Tuesday I will have a bronch / lung biopsy to check for any rejection or infection and clean out anything sitting around down there. I know something is in there but haven't been able to get it out so hopefully the doctor will get it out then. I'll try to update soon after my appointment. Thanks again to all those who have been so supportive!

Tanya's Lung Transplant 19: 10/2/09

Last Day in the hospital

The nurse said they have patients who "barely fit" into this gargantuan wheelchair...
It's a good thing the McDonald's inside the hospital has wheelchair access.

No, I'm not that white! I have to wear these "TED" hose for 3 months post TX to keep from getting a blood clot. They are super tight and uncomfortable!

Back home finally!

Checking my daily medical log to make sure I get everything done.
B/P, temp, weight, breathing test numbers, 0xygen/heart rate stats, blood sugar check and insulin, and lots of pills

Leia missed her mommy

Box of meds is more filling than this soup!

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.

Tanya's Lung Transplant 13: 8/31/09

Tanya had a thorocotomy on Friday because her x-rays were indicating that there was a "bleb" on her left lung, which is something like a blister or weak spot in the surface, which needed to be removed. This involved reopening her transplant incision and going back on the ventilator for the third time. The procedure went well, and it turned out to just be an air pocket and not anything wrong with the lung itself. The pain from this procedure was horrendous, and lasted a few hours, but that same evening the pain became more tolerable and the next day her chest tubes were removed. Being stuck in icu all this time is really starting to get to her. Every time we're supposed to get out of there something else comes up, and we end up staying longer. While the frustration is starting to drive us mad, I know that the increased care and attention she's getting in icu is something we just might wish we still had someday in the future.