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.