Bronch June 15th

Well, the weird brown stuff showed up in my bronch again! Ugh! Still don't know what it is. It doesn't seem to be affecting me too much at least b/c I haven't have any fevers and my lung functions hasn't had an major decreases. Still I'll continue to worry as long as that stuff is in there since we know it's NOT normal. They gave me an IV of antibiotics and a large dose of steroids after the bronch while I was still feeling sleepy. I get to go down to 7mg of Prednisone now instead of 10mg!!! Yeay! I'm on th elowest dosage of my pain patch so I'm gonna try to get off that slowly. It's supposed to stay on for 3 days and then you take it off and put a new one on but to get off of it, you have to increase the days. So first I'll try going every 4 days and then every 5 days and then 6 days and that's it. I hope I can handle it. I still have pain but I hate being stuck at home b/c I'm not allowed to drive. I still have one oral pain med though too. I don't know if I'll have to be completely off of that too. One of my immunosupressent drugs (anti-rejection) I have to open up and let it disolve under my tongue, has caused me some issues with food too. Anything with even the smallest amount of spiceyness to it will set my mouth on fire for at least 10 minutes. It really sucks! The only thing to do about it is take it orally but I'll have to take double the dose and have to wait an hour after I eat or take any pills and wait 2 hours after I take it to have anything too. Biggest concern is if I take double the dose then that might double the side effects..........not good at all! So I'll wait and see if it gets any worse and think about it more.
I have my 1 year transplant check up Aug. 16th and 17th! Can't believe it's been almost a year! I spent so much of it in the hospital that it seems like I haven't been living with my new lungs that long. Man, I am just sooooosoooosoooo glad that things have gotten better! For a while there I didn't think I was gonna make it and now I finally have some more hope and believe I might have a future.

Surgery on Tuesday

Well, the plan is to go in on Tues June 1st and get this stomach J-tube taken out! Oh man I can't wait to get it out but at the same time, I'm not looking forward to being in the hsopital again and having yet another surgery! Ugh! I've had this thing in for almost a year! Got it even before TX. It gave me a lot of pain and doing tube feedings is no fun. Having to roll around the stupid poll that my bag of liquid feedings was hanging onto everywhere I went. I couldn't go anywhere while I was on that. At least while I was home, we got it down to doing the feedings only at night. It's still a pain to get around and having to flush it, clean it, fill up the bag every night, setting the pump up, picking up the poll where it wouldn't roll, having to go to the bathroom a lot, having constant diarhea from it, the uncoftableness with the button sticking out and making sure you don't do somethign to hurt it, along with dealing with IV meds too, and pain, ugh! Things have gotten better thoug. No IV meds, haven't been tube feeding for about 2 months now and keeping my weight on despite still not being able to swallow some things without pain. This is one more step in the right direction. My lung function has been pretty good but down a little from a week ago. I have a bronch due on the 15th so that should bring my numbers up again. I'll try to post soon after surgery along with some pics. Till then, I'm lovinng my new pup so much and she's keeping me smiling.

It's all good....

Had my appt. today and things are looking better for me FINALLY! My weight has held steady off of the tube feedings so we decided to get the sucker taken out soon. Just gotta call back about what day works best for us. I always worry about the abscess coming back or needing the tube feedings if they ever end up deciding to stretch out this awful stomach wrap. I was told I wouldn't need it and that they've never had to put another one back in after taking one out. I had to remind them that I am not like most people and all the unusual unexpected stuff happens with me, haha. They all laughed and agreed, hahaha. It's not really funny but I gotta joke around about it b/c otherwise I'd cry about it, haha. I'm not feeling like the abscess has come back so maybe the monster is gone FINALLY! Ugh! What a nightmare!
Now for even better news....my PFT's were up even after a month past my bronch. I just hope they keep up! I blew FVC 88% and FEV1 83%!!!! My records so far! My friend Mary took me to clinic this time so I'm thinking she's good luck and I might try to bring her along more often, hahaha. It was also the shortest time I have ever waited at clinic. Everything flew by and only really had to wait to see Dr.H. As far as the brown stuff in my lungs, well, nothing came back on the cultures, which I think is also a first! I can't believe I don't have some flaring big bad bug for a change! I'm thinking the brown stuff was some old blood that got stuck b/c when I coughed some up after the bronch, it looked like it might be that. It definately didn't seem like fluid. Seemed like it was mixed a little with mucous and was all gooey and super sticky. I coughed it up 2 times and that's been it. So everything seems to be going well. I was even lucky enough to see my Transplant Surgeon, Dr. Sheffiled, as he walked by the room I was in at clinic. So, I was lucky enough to talk to him and he definately remembers me b/c I'm a repeat customer, haha.
I'm planning on making it to my first Lung Transplant Get Together on Sat. They are having a BBQ in Tarpoon Springs. Sadly we will all be missing one b/c about 2 weeks ago we lost our Lung Transplant/CF girl, Samantha. She was only 19. She missed her Mom that had passed a year earlier and wanted to be with her and now she is and no longer suffering. But there will be plenty of celebration for all those who have made it with new lungs and enjoying every day.
Also, we adopted an 8 month old Lab mix puppy from a shelter b/c I needed something more to help me mentally and I'd been wanting a dog I could play with. Our other dog is 8 years old and she just sleeps all the time and rarely ever plays. Now that I can breathe, I want one the do stuff with. Our new puppy, named Ripley, has been wonderful and brought lots of love and laughter into my life. She loves the doggy park and the doggy beach. She's pretty well trained and learns pretty quickly. I'll try to get some pics up soon.

So much craziness!!

So my PFT's went down again and I had another bronch done on April 20th and they sucked out some brown stuff! They didn't know what it was and I've been waiting to hear something. I'm so tired of going through this cycle. Wish my numbers would just stay up! Could it be b/c I can't cough stuff up or maybe food is backing up in my esophagus in getting into my lungs b/c I still have trouble getting food through the NIssen stomach wrap? I think they might have to go back in and loosen the wrap. Not looking forward to another surgery, UGH! I STILL have my pick line in from the IV's I did for 7 weeks but have been off for over a month but they decided to leave it in incase the junk in my lungs needs to be treated with some more IV's. Good news is still no rejection! I am eating a little bit more variety even though it hurts sometimes.
Today I found out about a CF and Lung Transplant friend, Samantha Peterson, passed away early this morning. She was VERY young! I'm so heartbroken! But it's good to learn of people who have recently gotten their new lungs and are doing great. Just wish everyone could do well and not have the pain with it!
I also learned yesterday that someone I trusted and thought that I knew and was like a grandfather to me and helped us out a lot, had an interest in me that was not grandfatherly and very disguisting. We had known this guy and his wife for about 3 years and met them at pulmonary rehab. I'm in such shock!
Today we had some neighbors 2 houses down that had cops and forensics all around their place. Seems like the story is that the guy who lives there, who is a cop, his younger son got ahold of his guns and was shooting them off. Someone driving buy that was a worker in the area thought they were shooting at them. When the father got hom his handguns were gone and he noticed gun residue.
I'm still not talking to or seeing my Mom b/c of problems she has to work out before I can trust her.
So much crap!!!!
The one good thing that has happened is we adopted an awesome black labador mix from an animal shelter. She's 8 months old and already house broken and knows sit. She's so loving and playful. I have so much fun with her especially in the backyard where she can run. She makes me laugh and smile everyday. She's doing pretty good with my 8 year old cocker spaniel but she's not really into playing with the new puppy too much. I'm so glad I got her b/c otherwise I would be freaking out WAY more. I needed something like this in my life to cheer me up and the timing worked out perfect. Don't know if the doctors will like it but my mental health is important too. One thing my life certainly isn't, is boring!

Good and Bad news

Yesterday I went to my lung transplant doctors. We were at the hospital for 11 hours!!! Some of that was due to bad coordination and the nurse screwing up. I had a CT Scan done for the abscess and they made me drink the contrast which was nasty of course. I've never drank it for a CT, usually they do that IV but I guess since I was already doing so much IV, they didn't want it done that way. Well, by me drinnking all that, I had to wait almost 2 more hours to get the bronch b/c I'm not supposed to have anything in my belly when they do that so there's no chance of throwing up and it going into your lungs. The good news is that the Abscess has shrunk!!!!!!! I had a feeling it had b/c it hadn't been hurting me as bad the last few days. So it seems like the IV antibiotics are working!! Doctor said I'll be on them at least another 2 weeks, which I expected anyway.
Bad news is that I have an infection and the fungus, Thrush, in my lungs. So I did an IV of an antifungal while I was there and I have to make sure the swish and swallow my medication called Nystatin 4 times a day......most importantly after I eat. Blah! We are waiting for sensitivity testing to find out what can be used to treat the infection. Hopefully it's gonna be what I'm on. Sucks that it seems I can never be without infection. I hope one day I can be infection free b/c I can't keep doing IV's my whole life.
Well, Monday was my 6 month transplant anniversary! That means I get to stop taking my anti-viral pill every day. That's gonna be nice, unless I catch a virus. I have to say once again that I am so happy that I'm not stuck in the hospital doing all this! Hopefully I'll be better by the time my cousin comes down from Ohio and visits and later on my friends and Aunt. I wanna get out and have some fun! So I guess I'm also hoping for it to warm up a little too.

Bad News!........The Abscess is back!

The abscess I had in Dec. that led to another thoracotomy and lots of pain, is BACK! They are hoping a long run of IV's might work this time since it was opened up a month ago, otherwise, might be another surgery! Man, this sucks!!!!!!!!!!!!!!!! I'm back to having severe pain swallowing so that cuts back on what foods I can eat even more than it was! At least they are letting me do the 2 IV meds at home for now (Colistin and Zosyn). I'm having a bronch on Tuesday and a week later they want me to come in for re-evaluation of this horrible abscess! I can't believe this sucker came back! Might have been that I was taken of IV meds too soon. I was on them for 2 weeks before the surgery and 2 weeks after. I've heard that most abscesses usually are treated with 6 weeks of IV's. Who knows though really if even that would have done the trick. It was nice to have a break from the meds b/c they were kicking my butt with crappy side effects but not good if going off them led to this monster's return. I just hope and wish with every inch of my body that I won't have to go through what I went through before. I don't even know if I can handle that!? What if I went through all that again only to end up with it coming back again! I'm glad that at least I started on some Lexipro for depression and anxiety. I'd be even a bigger mess without that! Being at home helps too. Still, I feel cursed. Life is sooo unfair!

Jan. 8th Hospital Update

So on the morning of Monday the 5th, the day after the sinus operation to fix the first sinus operation, Tanya's transplant surgeon's nurse practitioner came to the room, and said let's take out those JP tubes. The JP or "Jackson-Pratt drain" is a long rubber tube placed inside the chest cavity during surgery with something like an ear bulb that hangs outside the body for excess fluid and blood to drain into. She had these tubes for transplant and both post-transplant thoracotomies. Having these tubes pulled out, while painful, is great news. For one thing, having a tube placed between your lung and chest wall causes pain every time you breathe because you have this foreign object scraping up against the inside of your ribs, and for another thing, having the tubes pulled out means you're far enough along in the healing process to go home soon.

We were happy that she was about to have her JP's taken out. This was one of the major things we had been waiting for, one of the last hurdles to jump before getting out of the hospital. They told us we had to wait two weeks after her thoracotomy surgery, because one of the JP's was stitched in with a dissolvable suture, and it would take that long for the suture to be absorbed and allow the tube to be pulled out. She had experienced moderate pain with all the previous times they removed the JP's, but it never lasted long, and was nowhere near the magnitude of all the other pain she had gone through. This time, I knew there was something wrong when the nurse pulled one of the tubes and Tanya started screaming. It wasn't a fill-your-lungs-with-air-and-belt-it-out scream. It was the scream of someone breathing short and shallow because of shock. The JP tube the nurse was pulling was the one that was put in the space that was occupied by the abscess they removed in surgery. It was stretching out of Tanya's side like a rubber band, and contracting back in- it wasn't coming out. Tanya said later that it felt like her insides were being pulled out. The nurse was surprised and made nervous by this happening, and said "let me try to pull out the other one," and pulled it out with no problem. The nurse said maybe the stitch hasn't dissolved yet, "I'll try twisting it." I couldn't hold Tanya's hand anymore at this point, because I was on the verge of fainting and falling face-first on her. It was too much for me, the combination of Tanya's labored screaming, the rattling of the bedrail from her trembling, and watching this JP tube being yanked like a lawn mower pull-cord. After way too much of this, eventually Tanya heard a "pop" and the tube came out, and we went from overwhelming pain to overwhelming fear. The end of the tube that came out of Tanya's torso was much shorter that that of the other tube. This raised the question: was the stitch still there, and make a popping sound by breaking, or did the end of the JP tube break off inside Tanya's chest? "No problem" the nurse said "if a piece broke off we'll just go back in and get it." Back in and get it. Back to the OR. Back on the ventilator, back under the knife, back to ICU and back to having chest tubes and JP drains AGAIN. So the nurse practitioner ordered a stat x-ray and another CT scan (which is bad for you), and once again we were left to wait, wondering and worrying. Luckily we didn't have to wait long for these results, and there was no JP fragment to be found in either the x-ray or CT scan. As it happened, the stitch that was holding the JP tube down hadn't dissolved in the slightest OR broken off, and whatever tissue in Tanya's chest it was sewn to had given way and that was what made the popping sound. Everything's going to be ok, they said.

After waiting another day to make sure the bleeding from her sinuses was under control (she actually did start bleeding again, this time out her left nostril and eye-but not nearly as much), Tanya finally came home from the hospital on the 7th of January, one day before her five month transplant anniversary (which is today). After spending a month in the hospital, such a simple thing as walking through your front door becomes just as much a cause for celebration as pretty much any holiday of the year. The docs say she's doing very well, and discontinued all of her IV antibiotics. Now it's back to healing and catching up on sleep (which she's doing right now) and making up for missed holidays.
She's had some stomach pain today, but I think maybe when she tasted some real, non-hospital food, she probably ate a little more than she was ready for.

Sinus surgery recovery room

From Tanya's nose

The length of the tubes from the black stitches(near her right hand) to the other ends that she's holding in her left hand are the portions of the tubes that were inside Tanya's chest cavity, with the bulbs hanging outside her body.

The picc line that was in Tanya's vein from her arm almost to her heart.


Waiting to leave. The blue plastic gown is a precaution against germs.

How beautiful!!

Jan. 7th Hospital Update

A lot of things have happened since the last blog post. I wish I had the ability to make everyone understand fully just how much pain and horror Tanya has gone through, even though you'd never know by speaking to her. Tanya wants to make you smile, not cry, and most people will laugh and joke with her without ever having any idea how much agony she's in, but when you leave the room, she'll say "I need my pain medicine, I can't stand it anymore."

I'll just do my best to describe these latest nightmares, and start where I left off. As I mentioned before, the sinus "roto-rooter" surgery was a simple procedure. After the surgery the doctor came out and told us that she "did good" and that he cleared out a lot of junk from her sinuses. She had to stay in recovery until her blood pressure went down some, and they told us that the severe headache and bleeding from her nose was normal and should stop in a day or two. She was saturating a gauze sponge with blood from her nose every fifteen minutes for the first couple hours. Her cheeks were getting raw from having the gauze tape peeled off over and over again. Over the course of the day the bleeding finally slowed down, and we were able to watch the New Year's fireworks out her hospital window without a single gauze change. The next day continued much the same, still having enough bleeding to necessitate gauze but not enough to be considered "not normal," and the next day, finally, the gauze came off altogether. We thought she was pretty much over this "simple procedure." Then on Sunday night she started bleeding again, this time PROFUSELY. Do you think that having blood pour out of your nose is a scary thing? Tanya had blood flowing freely from her nose, down the back of her throat and out her mouth, and out her right eye. She filled up three puke basins with blood soaked sponges and tissues, and was still going. This was the point where the bleeding had finally crossed the line and had become "not normal," and her nurse and doctor were pretty much freaked out. So on Monday morning she went back downstairs for another surgery, the seventh one in the last six months. The doctor did a little cauterizing and sprayed some medicine and left a pack in her sinus, but was still pretty much baffled as to why she was still bleeding. He came out after the surgery and told me "she did good" again, and to let him know if the bleeding kept up.

I'm going to finish this tomorrow.

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.

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.

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.

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/