Wednesday, December 30, 2009

Dec. 30 Hospital Update

The thoracotomy procedure to remove the abscess between Tanya's esophagus and trachea went well, but of course she's suffering through severe pain, and up until yesterday, more severe nausea and dry heaving. It took until yesterday to finally get some things done to fix the nausea that actually worked. Some non-essential meds were discontinued and she was given phenergan which seems to be the only drug that has any effect. Since we had come in on the 8th of this month, everyone had been singing the praises of zofran for nausea, which does NOTHING. She had two chest tubes taken out the day after surgery and only spent a couple days in ICU.

Tomorrow Tanya goes for a sinus cleaning surgery at 9:00AM. It's a simple outpatient surgery and shouldn't take more than two hours. According to the doctor and her surgeon's nurse practitioner she should have her last two drainage tubes taken out and be able to go home next Tuesday. Pretty sad, but we've been suckered into the old "you'll be going home on this day" gag too many times. We don't believe it for a second anymore.

Saturday, December 19, 2009

Dec. 19th Hospital Update

This is Shawn again, Tanya has asked me to post an update to her blog, and that should say something about the way things are going. I'll start out a little bit before Tanya's last post, and try to get a more descriptive picture of the whole story from the beginning to now in one post.

As Tanya said, she woke up on the morning of the 29th of November with a bad pain in her throat. She had mentioned before, that she had trouble swallowing, and that there was a sensation of something in her throat like a pill that won't go down. That problem was actually there ever since the bravo ph test, where they attached a microchip to her esophagus, but this was a more severe pain - bad enough to call the doctor. The transplant clinic told us to come in that Monday, which we did, and the problem was (rather quickly) diagnosed as thrush. So they put an IV line in her wrist and we spent the next two days coming back to the hospital to get an antifungal medication intravenously. On the third day she had a CT scan, which it seems they've just found out are really bad for you, and found that she needs to have her sinuses "roto-rooted" to clear out some buildup. We were told that the thrush looks better, but to come back Monday for the sinus cleaning procedure. She was still feeling very poorly. We weren't able to make it to our friends' anniversary party in Orlando on Saturday. We were planning to go to the transplant clinic's Christmas party on Sunday which also happens to be our four year anniversary, but she felt so terrible she couldn't even get off the couch. Sunday was also the day that her severe nausea and dry heaving started. One of the added advantages (or, in my opinion, disadvantages) of the nissen fundoplication surgery she had is the inability to vomit. The advantage is no mess to clean up. The disadvantage is that if there's something in your stomach that shouldn't be there, like bad food, it can't be gotten rid of, because the esophagus is a one-way valve now. If you've ever been nauseous, and tried not to throw up, but lost control and threw up anyway, and felt better and glad after throwing up, imagine going through all that, but without the feeling better part at the end. Tanya would dry heave, expelling nothing, and a few seconds later go through it all again.

We went to the outpatient surgery section of the hospital at 9:00 on Monday morning expecting to be put in a room, get a picc line put in, get antibiotics in her system, ("we don't want them stirring up the bacteria in her sinuses without her being on antibiotics") and have the sinus surgery done at 2:00 pm. Tanya was feeling awful and couldn't wait to lay down in a bed, even if it was going to be a crappy hospital outpatient bed. The lady at registration didn't know anything about us getting a room and bed, and thought we had just shown up early for our 2:00 procedure, and just expected that we were going to sit in the waiting room for five hours. Tanya called the transplant clinic to see what was going on and why would they not let her have a room and bed, and they told us to come over there to the transplant clinic. As for the entire story of what happened that Monday when we went to the transplant clinic, the only thing I will say is that the whole trip ended up to be a waste- nothing constructive happened, we went home, and as of now still haven't had the sinus surgery done.

They did a bronch on Tuesday despite her being nauseous and dry heaving and cleared out a lot of mucous from the lungs, and finally got her into a room on 8A (a room with half a view, a lousy couch that probably wouldn't sell for $20 at Goodwill, no refrigerator, and a 1980's TV that changes channels about a third of the time you press the buttons). We had asked the doctors to prioritize the lump between Tanya's esophagus and trachea, since that was causing an incredible amount of pain and nausea, so she had a consult from some resident surgeon girl from the GI team who told Tanya things like "It is what it is" and "you were dealt a bad hand with CF" and threw around the word cancer like she enjoyed it. Also when Tanya had her picc line put in for the antibiotics, she started having severe pain for the first time she's ever had a picc line put in, so the nurse who was doing it said "she's had too many picc lines" and said it was all the scars in her veins causing it to be painful and tried another spot and finally got it in. Tanya said it felt weird, like there was a fluttering in her chest, and the lady said "oh it's fine, but I'll check the X-ray anyway" like it was an inconvenience. So it turned out that the nurse had pushed the picc line too far and had to come back and pull it out some, and when she did, she put the biopatch disc on TOP of the picc line instead of AROUND it. That's not a good thing. Tuesday was turning out to be a worse day than Monday. Tanya then went for some swallow tests where she was supposed to swallow some radioactive sludge to see how it goes down, but the radiology department refused to do one of the tests because of her nissen surgery. It took two days for the GI doctor to even LOOK at the results of the test she did have done, and when he finally did he just re-ordered the test that the radiology department refused to do. Also they came to the room and told us that Tanya would need ANOTHER bravo ph test to check for reflux which we and her transplant team think is ridiculous. If she can't FORCIBLY expel the contents of her stomach by vomiting, how in the world could it be possible that she's refluxing? All this time we're being told that it's a "Zenker's diverticulum" which is a pocket that forms off the side of the esophagus and traps fluid and food and can be corrected through a simple procedure through the neck - laparoscopically. After yet another test, an EGD, the GI people told us "the good news is that it's NOT a diverticulum," but they still had no idea what it was. I'm still not quite sure what it is that makes that news "good". So then she had another CT scan, which is bad for you, but this time with contrast. After two days of waiting for the results of the CT scan Tanya went down for another bronchoscopy, but this time they used a needle to try to extract the contents of this mysterious mass, wich they could run tests on and hopefully determine what needs to be done. Then she had a third CT scan. All these days in between the millions of tests we have to sit there in pain and wonder and imagine and worry about what in the world could be going on, and when we walk the hallways we see other hospital rooms with nice HDTVs admit new patients and release them a few days later, all while we're still worrying and wondering why no one can tell us anything.

Finally yesterday we were told that this thing is an abscess, and she needs to have surgery to drain it. That means they're going to open the same incision they had cut for her transplant, clear out the scar tissue that's already there, drain the pus, spray some antibiotics in the abscess, and put in two drainage tubes. Then she's going to spend time in ICU. It's not a simple procedure. It's a "tough position" to get to, says her surgeon. We still don't know what caused it. They're going to "look around" while they're in there and see if there's a leak in the lung, or a hole in the esophagus or something. This is supposed to happen Tuesday morning, but they found pseudomonas in the pus they extracted, so they'll try to get it pushed earlier if they can.

We knew it would be hard after transplant, and that there would be "bumps on the road" to recovery. This is NOT a "bump on the road." It is ABSOLUTE FUCKING TORTURE. We thought we were done with all this. She wouldn't take being in ICU, on a vent, with chest tubes over ANYTHING. Why couldn't it have been something simple? It had to be something that baffles the entire medical community, and something that requires major surgery.

What is your worst memory in life? Mine is seeing her laying in her hospital bed with tears in her eyes and saying "I just wish I was home and healthy," knowing that there is nothing I can do. All she wants is to play with her dog and eat pizza and go to the beach, but that's too much to ask. She doesn't deserve this. How much can a person take? We tell people what's going on and they say "Aww we were hoping she'd be home by Christmas," complete with the sympathetic head tilt. Well, we were just hoping she'd have a little less pain by now. We were hoping she'd be able to go swimming by now. We were hoping she wouldn't be choking and gagging from the worst nausea imaginable by now. We were hoping she'd be able to EAT SOLID FOOD by now, or do any small FRACTION of the million things that 99% of people do without thinking twice about every day, that she CAN'T do, because she either doesn't feel well enough, or because it's against the "rules". We had hoped that she could celebrate the 4th of July, her birthday, my birthday, and our anniversary, but we couldn't, and now we get to miss out on Christmas and probably New Year's at home too.
All this began with a flat tire on the way to the hospital to get her transplant. At least we had a good Thanksgiving.

Thursday, December 10, 2009

Dec. 10th Hospital update

Well, my surgery got postponed on Monday due to scheduling screw up and no beds open in the hospital. So I came in Tue. morning and got my bronchoscopy done. Tons of goop, a little pneumonia and some thrush in my lungs but no rejection. We decided to first focus on this thing in my throat b/c it's becoming worse and is bothering me the most. They also said that it's causing me to aspirate into my lungs which caused the small area of pneumonia. The technical term for it is called Zenker's Diverticulum. Did some tests yesterday and they have me on IV antibiotic, antifungals, etc. No eating anything again! Just ice chips, water, and I can suck on hard candy. This time sround I actually don't want to eat b/c it hurts my throat and I feel like I'm gonna barf. I am feeling better today than when I first came in. Not dry heaving constantly throughout the day like I was. Since I'm not eating, they have me back on tube feeds 24/7. Still waiting to hear from the GI surgeon/docs to see if they want to do more tests or schedule surgery. Seems like everything takes sooo long to get done. They've been swamped here and overloaded in the ER so I guess that's why. I think the plan is to do the sinus surgery after I recover from the other surgery so I'll probably be here for 2 weeks. Hopefully things will go right and I'll get out of here before Christmas.

Friday, December 4, 2009

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!

Tuesday, November 17, 2009

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!

Thursday, November 12, 2009

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

Wednesday, October 14, 2009

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!

Saturday, October 10, 2009

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!

Friday, October 2, 2009

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!

Add Image

Tuesday, September 29, 2009

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.

Wednesday, September 23, 2009

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

Saturday, September 19, 2009

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

Tuesday, September 15, 2009

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.

Sunday, September 13, 2009

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.

Wednesday, September 9, 2009

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.

Friday, September 4, 2009

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.

Monday, August 31, 2009

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.

Thursday, August 27, 2009

Tanya's Lung Transplant 12: 8/27/09

Tanya's progress has been very good, she has been doing her breathing exercises and tests with better results every day. Yesterday she got to just above 1000 on her incentive sporometer, and she's also able to cough more and more every day, which is essential to bring up drainage and fluid in the lungs. We haven't gotten out of the icu room yet, because the doctor wants her chest tubes to be off the wall vacuum so she can walk around first before they transfer her to the transplant floor. It can't be much longer now.

Sunday, August 23, 2009

Tanya's Lung Transplant 11: 8/23/09

Tanya's doing much better today, mentally and physically. Her morning x-ray looked good and she went for a barium swallow test and did very well on that. When she got back to her room around 3:30pm she stood up and took steps backward and forward for about 12 minutes, which is fantastic.
Yesterday and Friday were extremely stressful, especially all day yesterday. We got a call from her nurse around 7:45am to come to the hospital as soon as possible because she was about to have another chest tube put in because of an air pocket in her chest which could cause a lung to collapse. That was some pretty awful news, and she was terrified. We got there around 8:30, right as her doctor got to the room and had all the materials ready to go to do the procedure, and noticed that her existing chest tube seemed to be doing a much better job than it apparently was before, and that maybe she didn't need an additional one put in again. So he ordered an x-ray "stat," and some time later we learned that there would be no chest tube and a huge weight lifted off everyone's shoulders.
Soon after, Tanya started drifting in and out of unconsciousness, which made her nurses a little nervous, so after trying to get her to wake up and not pass out again mid-sentence for about 20 minutes they did a blood gas test which is excruciating, and determined that she was just "really pooped." So we all let her sleep as much as she wanted after that, and this morning she's like a new person again, having had the first night of real sleep in a long time.

Friday, August 21, 2009

Tanya's Lung Transplant 10: 8/21/09

Tanya's in a lot of pain right now, her doctor changed a lot of her medications and says that her body is "getting used to it." He says he wants to gradually introduce the meds back into her system so they can avoid another fever episode, which was a nightmare. Unfortunately one of the meds they discontinued was her effexor which is an antidepressant, so on top of the pain, her mind and emotions are haywire as well. It doesn't help at all that she suffered a very traumatic experience while on the vent, which caused her to pull the tube out herself, which is not the best thing to do, because you can damage your vocal cords. She woke up with the vent in her throat, which is horrifying to experience, because it feels like you're suffocating, and she laid in bed for three hours trying to gesture and communicate to the nurses that she couldn't breathe, but they didn't understand. They kept telling her to wait and be still, but they wouldn't remove the vent. Maybe her doctor wanted them to wait until he got to the room before they pulled the vent out. He happened to show up almost immediately after she "self-extubated." There are many more details to this horrible experience that I feel are not my place to disclose, so I'll let her tell the story when she's able. I can't imagine how that must have felt. I hope this pain she's having gets better soon. It helps to try to think of all the people who have gone through this and say that yes the pain is awful, the worst pain ever imaginable, but it gets better, and the benefits are worth it ten times over.

Wednesday, August 19, 2009

Tanya's Lung Transplant 9: 8/18/09

Early Monday morning, Tanya hit a temperature of 102 degrees, which initially they thought was due to infection. Her nurse explained to her what a serious thing this was and told her the options, and Tanya said "do what you have to do." She was put under sedation and "reintubated" which means put back on the vent. Her doctors ordered a whole catalog list of antibiotics. Her temp kept climbing and her heart rate was up to 150. Sometime around 4 or 5 o'clock Tuesday her heart rate and temperature started going down and eventually reached normal. Now her doctor believes the fever was a reaction to one of the medications she was on, because all her numbers were good, and her oxygen was good, everything looked okay except she had a fever.
When I called this morning they said she's still doing well, and they're going to put a picc line in, pull the central line out of her neck, take her off the vent, and wake her up. Her white blood cells are going down to normal levels. White cells go up in the case of an infection, so it would seem there's no infection, but they're still watching for it. Still not 100% out of the woods yet, but shes on the right path. I'm glad they didn't rush her out of icu.

I've made some changes to the settings on the blog, so anyone who wants to should be able to leave comments now. Sorry about that, I'm a blog nØØb, this is my first blog and it's not even mine.

Monday, August 17, 2009

Tanya's Lung Transplant 8: 8/17/09

Tanya's still in icu for another day or two, it seems her doctors want to keep a close watch on her a little longer. It's good that they're taking their time with things, and making sure not to rush the process along. They still need to adjust the dosage of her immunosuppressant medication also, there's really no standard for that since everyone is different.

Saturday, August 15, 2009

Tanya's Lung Transplant 7: 8/15/09

It's been a full week since Tanya had her transplant, and hopefully she'll be getting a normal room tomorrow. She seemed much better today than she did yesterday, like she's actually been able to get a little sleep, and not so shaky from the meds. The pain is still a 7 out of 10, but it's going to take time for that to go away. Late Thursday night she had a bad episode of not being able to breathe right, like there was something stuck in her throat, but they took care of it with some kind of mini-bronch and fixed her up. They're keeping her on 4 liters of oxygen all the time except when she gets out of bed, they crank it to 6 liters. I think she's just weak from not enough physical activity, plus I'm sure the body takes time to get used to two brand new vital organs, and it's only been a week. Things will get better when she's able to actually walk around and get some exercise.

Thursday, August 13, 2009

Tanya's Lung Transplant 6: 8/13/09

Today hasn't been so great. Tanya still hasn't been able to get any real sleep because of the pain and all the activity going on around the clock. They stopped the epidural and started the medicated patch again, which doesn't seem to be as effective. They say that there is still a lot of drainage in and around the new lungs, so it seems they plan to do another bronch to try and have a closer look and maybe remove some of the excess fluid. I guess there are always going to be good days and not so good days. At least they're talking about getting her into a normal room this weekend.

Wednesday, August 12, 2009

Tanya's Lung Transplant 5: 8/12/09

Four chest tubes were taken out today finally. They say most of the pain comes from the chest tubes, so hopefully now we'll start noticing some real improvement in the pain. We did notice that today she's been complaining more about pain from other places, so maybe the chest pain has gone down some, and she just doesn't realize it. Again we didn't spend so much time with her since she was so tired. I hope tonight she's able to get some actual sleep.
There's a possibility that she'll be moved to a regular room this weekend, which would be great.

Tuesday, August 11, 2009

Tanya's Lung Transplant 4: 8/11/09

Tanya was very tired all day. Sleep is almost impossible. People are coming in all the time giving meds, or checking blood sugar or this or that, and even if she had a little quiet time without being disturbed, the pain is too terrible to sleep. No chest tubes out yet, and she had to be given two units of blood, which bummed her out. Even though she's dead tired, she's still talking nonstop, though not smiling as much. Mary and Lori and Al all came to visit today, which is a great help to her mood. Her mother and father and I have been to see her every day, but good friends coming to visit makes her day like nothing else. Having the support and care and companionship of so many people is going to be a big factor in her recovery.




We're going to have to be more patient with having the chest tubes out, which is hard for everyone, but it'll all be worthwhile since she'll be able to do things she could only dream of doing before.

Tanya's Lung Transplant 3: Monday 8/10/09

Today Tanya got out of bed and into a chair. She sat there for hours and talked to us nonstop, smiling and laughing, never coughing once. She's now on a different pain med, one which gets delivered when she pushes a button. They say most of the pain is from the chest tubes, some of which will hopefully be removed tomorrow, so she can start walking. She's still doing amazing, and looks even better than yesterday. I know tomorrow will be even better. This post is short because I'm exhausted, but there will be plenty more news to come.

Sunday, August 9, 2009

Tanya's Lung Transplant 2: Sunday 8/9/09

Tanya's progress is still remarkable and better than average. This morning around 10:00 I recieved a call from Ron her stepfather who arrived at the hospital early that she had the ventilator removed and was awake, talking and smiling. She told him she felt like she had been hit by a train and he said "A big train or a little train?" and she said "A big one." When we finally got there we saw her surgeon, and he said the lungs are working well and so is the rest of her. There is less drainage from her chest cavity than average, and it's not too bloody which is very good. They still have to keep a close eye on her reflux, so she'll be tube-fed for a while longer before she's able to eat anything. She still has terrible pain, but I wouldn't be able to tell by looking at her. If I had never met Tanya before and saw her in her bed today, I would have thought maybe she's in the hospital because of some broken ribs or a bad flu or something, I would never have guessed that less than 24 hours ago she just had such a massive and risky procedure as a double lung transplant. She looks amazing. We finally got to go into the room to see her after 5 and Kevin and Lori came to visit shortly after, which made her very happy. She was supposed to get an epidural, but the anesthesiologists were taking forever to get to the floor. I think the pharmacy is the worst department of that whole hospital. Everything takes forever. She got a dose of roxicet for the pain right before we left, which is what she received for her j-tube last month and seemed to help more than most of the other pain meds, and when I called around 9:00 pm she was finally just about to receive her epidural.

In the morning they're going to try and get her out of bed, which is important to do as soon as possible after transplant. Despite the awful pain(by the time I saw her it was like being hit by a "train AND a bus at the same time") she says she's glad she went through with it, and she's smiling ten times more than wincing.

Tanya's waving to you

She is going to be such an incredible inspiration and source of strength and motivation to people who don't know if they have the courage to go through a transplant, as she always has been to everyone around her, healthy or otherwise. Tanya hopes to one day establish contact with the donor family and express her gratitude for their tremendous gift of life saving lungs. I hope that Tanya's incredible story will help more people to realize that such an easy and effortless thing as organ donation can be such a great and immeasurable benefit to those people who are not able to take for granted the things that we do, like being able to walk twenty feet without running out of breath.

Saturday, August 8, 2009

Tanya's Lung Transplant 1: Friday 8/7/09

Tanya got the call announcing the arrival of two new donor lungs at 11:07pm Friday August 7th. She was afraid and excited at the same time. This was the call we were waiting for, though she'd only been placed back on the waiting list on Wednesday the 5th. We arrived at Tampa General Hospital around 12:30am, and Tanya was taken into pre-op around 7:30am. We had to wait in a hospital room until the surgeon personally inspected the donor lungs and gave the green light to carry on with the transplant. The nursing staff in charge of this room was ordered to deliver a slew of medications via IV before releasing her to the operating room. They had a difficult time placing the two IVs that were required to give all the medications in the time we had before transport came to get her. She had to be stuck four times in one arm and twice in the other before they got the IVs in. The transplant itself took until 5:00pm and we finally got to see her again (through a window in ICU) around 7:20pm. Currently she is connected to a ventilator which moves air into and out of the lungs mechanically, and chest tubes which provide drainage for internal bleeding and fluid. Also there is a central line through her neck which is used to administer medications and fluids. The procedure went well, and the new lungs are performing well and her vitals are all good. She is not being tube fed as of right now, so that her system can have a break, but hopefully tomorrow she'll be able to receive tube feedings again. The reflux from her stomach is something that will have to be watched closely until she gets her stomach surgery to fix the acid reflux in a few weeks.
It's going to be a long demanding journey, but this new chapter in Tanya's life is just going to be a small portion of the greatest story I've ever had the honor and the privilege to be a part of and to contribute to.

I can't describe the appreciation we all have for the extraordinary outpouring of support from all of our friends, family, and coworkers.

We got a flat tire on the way to the hospital.

I've been awake for 38 hours so I know I've left out some details, but I'll keep updating as they come back to me.

Thursday, July 30, 2009

Hi, Shawn here again, just a quick update on Tanya- this morning she had her feeding tube fitted with a "button," so there is no longer a cumbersome tube hanging out of her abdomen, just a small adapter for connecting the tube from the food pump. Still some pain, but the pain medication she's getting now seems to give some temporary relief. There is talk of her coming home tomorrow, so hopefully soon she'll be able to tell you herself what kind of ordeal this has been for her.

Wednesday, July 29, 2009

Update: 7/29/09

Hello everyone, Shawn here. Tanya's asked me to help her update this blog since sometimes being in the hospital it can be difficult. Yes, she's still in the hospital, though seems to be doing better than in the beginning. This has been a tough visit for a number of reasons, but a couple days ago things started getting better. She has been put on some better pain medication and had some sutures removed, so that in itself is a big help on her mood. I don't know how in-depth she wants me to go with everything that's happened, so I'll just say it's been hard, but still looking up and still going strong.

Wednesday, June 24, 2009


You can make tax-deductible contributions at and find me under the patient search menu...Tanya Hostetler. Also, you can help by doing your online shopping through our online website at


I decided to start this blog so everyone can easily find out what's going on with me through my lung transplant experience. When it happens, my boyfriend, Shawn, or another care giver of mine will update everyone until I am able to do so myself. I thank everyone for all their support and hearing from everyone is what helps keep me strong.