Tanya's Transplant Blog

Things are finally going better!

2011-11-11T05:55:00.002-05:00

It's been a slow process but my stomach is acting better. Way less pain! Still get nauseated here and there mostly due to the meds, blah. Lung function is in the high 80's and blood work is ok. Had a scare with my kidneys but they are better now. Still need to gain weight! I'm at 103 which is a little improvement. Really need to check and control my blood sugar levels better. I just hate it! So if nothing goes wrong, I won't be back to clinic for another 3 months! Still dealing with my ongoing transplant pain/stomach surgery pain across my lower ribcage. I'm getting back a little more energy but still slacking.
Looking forward to seeing my Dad for Christmas and hopefully be able to take a train down to spend Thanksgiving with my Uncles and new Aunt.

Eating again!

2011-07-22T01:12:00.002-04:00

After almost 2 years of not getting to eat "real food" like pizza, cheese burgers, meat, pretty much anything that isn't soft, I am able to get it down with little to no pain swallowing!!! However, I seem to have sever pain about 45 min. after I eat and last for about 45 min. too! Istarted taking laxatives, anti-gas, nausea meds, pain pills, etc... that seem to help some. Then when I drop my pain patch level, things seemed much better and I didn't have to take all that stuff. It laster a little over a week until tonight I got the abdomen pain again. Not as bad but still hurts a lot. Maybe I ate too much due to my decrease in stomach space from the surgery? Who knows. Anyway, I do think the pain meds had a lot to do with it now. When I get completely off in hopefully 2 or 3 weeks, I think my stomach will function and feel better. I'm sure it will be better for my kidneys too! (which btw, I was told the numbers for my kidney function was BAD so I've had to make myself drink more water.) I am loving eating right now! Oh how I've missed so much food! No longer stuck on soup, jello, pudding, and icecream all the time! My scar is healed but still pretty pink and ugly!! I feel like the bride of Frankenstein, haha.

Nissen Revision

2011-05-21T11:43:00.005-04:00

Shawn here again, going to do a quick post on Thursday's nissen fundoplication procedure. The surgeon who performed the operation was actually a stranger to us, not a part of the Rosemurgy/Ross round up of rock star residents, and despite the extreme cynicism and distrust of the entire medical industry that I have developed over the last two years, I like him. Unlike the original Rosemurgy team at TGH, who would do nothing but test- we need a bravo ph test, we need a barium swallow test, we need a CT scan, we need another bravo ph test- and after all these shiny new experimental tests that lead to more tests, and all the waiting and waiting for the results of the tests, and after all the pain and agony of this brand new one-incision laparoscopic surgical procedure, and all the inevitable check up (learning experience) visits in the hospital room (class room) by bright eyed, bushy tailed (complete fucking asshole) GI residents (kids), they still didn't do the thing RIGHT. When we first met this different doctor at the consultation for the surgery, we came in, he asked a bunch of questions, said "Okay, let's do this- come back next week" and now here we are. Done.

On the day of the surgery, the doctor came out about 11:45am and told us that he tried to go in with the scope and couldn't even find a plane where the wrap was attached because of all the scar tissue, and ended up having to take the whole thing apart by hand and start over, doing a 270 wrap instead of the full 360. "This was a hard one," he said. Yeah. What else is new. .He also fixed her "2nd bellybutton" scar from the peg tube, and overall we are under the impression that the procedure went well, despite him having to resort to "plan B," which involved open surgery instead of laparoscopic. The closing statement is that the wrap is very loose, and she should have no problem getting food down now. We'll see. They let her have a fentanyl patch yesterday and that seems to be helping more than anything else, but as of right now the pain is still terrible. The thing about Tanya though, is that she's Tanya, and even though the torturous pain is obvious on her face, she's getting up and walking and talking, and her doctors are hoping to get her out of there by Monday. I'll do my best to keep posting the progress- in the meantime, if anyone wants to visit her, the room number is A822.

Update for May - Fixing the wrap

2011-05-12T06:17:00.000-04:00

Well, after 3 dilations the docs have agreed that I need surgery to repair the Nissen Stomach wrap. I go in for Pre-op on Friday the 13th, haha. My surgery is scheduled for Thur. the 19th. We are using a different GI surgeon this time b/c my doctor doesn't have much faith in the one that did it. This surgeon seems much nicer and doesn't have the crappy holier than thou attitude. Unfortunetly I'll be getting cut in 5 places. Normally they are small incisions but he said they might have to be bigger if there ends up being a lot of scar tissue. The first surgery I had the doc only did one small incision through my bellybutton but I find out that it hasn't even been researched or normally done. I guess I was just one of their guinea pigs. Thanks again docs :( Of course they gave me a long list of risks. The normal stuff you hear including death but some other ones that I really didn't want to hear was that there's a chance they might not be able to fix it, they could screw up the nerves being that they are harder to find after the wrap is done, may not get any relief, could damage the stomach, etc... Oh I really didn't want to hear that. PLEASE let this surgery go right and I get some good relief. If it doesn't, I'm gonna totally loose my mind! I just can't handle much more! I still can't believe all of this has happened to me! Why couldn't things have gone better so I can enjoy my new lungs without all the pain! I don't understand why so many of the good people suffer and the bad ones seem to get by so easily! Life really is so unfair! :(

Another sugery!!!

2011-04-29T18:33:00.002-04:00

Aaaaahhhhh! When will this end!? At least it's been a while but I've had enough surgeries for a lifetime! And this surgery is to repair a surgery I already had!! Stupid Stomach (Nissen Fundoplication) wrap is still too tight and they don't think dilating it again will do any help. They sent me to another stomach doctor to see if he would do the dilation sooner than usual doctor b/c I was gonna have a long wait. This new doctor said He would NOT do a dilation b/c it's already been done 3 times and didn't believe it would help. He said it needs to do fixed surgically. He also said that I need to stop eating and only be on liquids!!! Noooooooooo, not that again!!!!!! I didn't listen to him until my lung doc said I should do that too. Well, I'm not gonna freaken starve myself! I'll cut back on some stuff and eat more super soft things. I was told he's not as concerned if I loose weight that it's more important that nothing gets stuck in my lungs. Surgery isn't scheduled yet. My lung docs still have to talk to the stomach surgeon first. I think they'll go in through the old incision in my belly button and take out the stitches keeping the wrap together and restitch it a little looser. It was pretty painful the first time but I was only about 1 month post transplant. Guess we'll see how this one goes. I am NOT looking forward to all the pain! I'm so tired of the pain! I just hope this will resolve my swallowing issue, reflux, and at least some of the continuos pain I have! I go to see the Transplant Lung doctors Wed. morning. They should have talked to the GI surgeon by then. I hope I can get this done and recover before I fly to Ohio late June!

Stretched AGAIN

2011-02-10T17:05:00.002-05:00

Well, they did the EGD with dilation. Which means these stretched my esophagus b/c it's too small where it goes into your stomach b/c of the surgery they did to prevent aspirating into my lungs. It's not common to have to stretch it and certainly not 3 times! I asked the doc if he knew why it shrunk again after being ok for 3 months and he has no idea, great. I think it's still a little irritated right now b/c I can feel it all the time. Like something is always stuck in there. It seems to be a little better but I might need to go in again and have it stretched more. Man, I sure hope it works this time and stays otherwise they might have to go in and fix it surgically and that would be way more painful! Guess we'll see how I feel in a month from now and what they say if I still have problems. Why can't my body be more cooperative?!

Bronch and Barium Swallow

2011-01-20T17:32:00.002-05:00

SO we were at the hospital by 6am today. Got my bronch done and they had me do a breathing test (PFT) and it was down 5% from a week ago! Not happy about that. Maybe it had something to do with doing it in the bronch chair rather than a regular one. I HOPE! There was white junk in my lungs which was probably fro the sinus drainage I had before my sinus surgery. It will take some tie before any cultures come back on it.
After that they had me do the Barium Swallow test again since I had been complaining about my swallowing again. Turns out for some reason, the area that had been loosened in my esophagus, shrunk back and the barium was having a hard time getting down into my stomach. That means I have to get another EGD with dilation. Ugh! Don't understand why it would go back to where it was after it was ok for the last few months. My body is always a mystery. I always end up with problems the docs haven't seen before. I am a learning experience to them. I should be getting paid! Haha

More tests

2011-01-17T00:15:00.002-05:00

Well, I saw my lung doctor and did my breathing test. Good news is that my numbers are good! 90% and 85% for 2 of the measurements. The smaller airways are always lower and some other number that I'm not sure what it's for. Weight is down a little. Sinuses doing good. Problem now is my chest pain has been worse the last few weeks and having a hard time AGAIN with getting food down easily. Getting that feeling that it's having a hard time getting through my throat into my belly. Finally the doctor agreed that it's time to figure out why I'm still having this pain. Plan is to get another barium swallow test, Bronchoscopy, CT of my chest and throat where the abscess was to see if there's anything there..maybe scar tissue or something. He's got me a bit worried b/c there is a possibility they might have to cut me open. I told him that if they have to open me back up on my transplant incisions and put in chest tubes, to go ahead and take my lungs out and give them to someone else b/c I can't handle that again...I give up! He started poking me in the belly saying loudy "WHAT, WHAT, WHAT". Then as he was leaving he said they probably won't have to do that. But just that there is a possibility freaks me out! Oh, also he said that he thinks it probably my stomach that's giving me the pain b/c the stomach is at the bottom of your ribcage. Feels like my lungs but since my breathign is so good, he thinks it's not them. Hopefully we will find out without too many tests and I REALLY hope it won't require another thoracotomy or anything too painful. I've been in pain for a year and half .....I've had enough!

Sinus surgery

2011-01-13T21:03:00.003-05:00

Surgery went pretty well. Still I was told there was a lot of bleeding. Doctor said that bleed really easy everywhere in my sinuses. However, it did not bleed as long or bad as the last time. A few days and it was done. They did have to stuff 6 packings up in my nose/sinus area to soak up the blood and help it clot. Felt like my brain was being pulled out when they pulled those out! Can't believe they could fit all that up there! Went home after a few hours of recovery.
Went in earlier this week for my post-op visit and he took a look and said things look much better. Still wants me to continue the sinus rinse and try to get in some sinus nebulized antibiotic treatments, which I hate b/c it takes like 30 minutes!
Tomorrow, Friday, I am going in for a breathing test (PFT) for research study and also b/c one of my coordinators said that the doc wants to see what my numbers are before doing on bronch next week. This frustrates me b/c we had already decided I needed a clean out 2 times the last month but decided to wait till after my sinus surgery. Not happy that I have to wake up early and drive all the way to Tampa for something I don't feel is needed. Wonder if the doctor forgot about our talk last time. I was upset to also hear from my ENT that my lung doctor had never even said anything to my ENT about how bad my sinuses had gotten before the surgery especially since he sees the guy a lot. I think they are getting overwhelmed there and heard they are looking for another doc to bring on board.
On a sad note, another lung transplant friend ( not CF) is in ICU. He's older so sometimes they get other complications b/c their bodies aren't as strong as us young CF peeps. He was having trouble and they thought it could be rejection at first and wasn't, tested and there was no infection. There were a bunch of cells, white stuff, in his lungs and that's why they thought rejection. I think he started feeling better but then the PICC line they put in his arm ended up giving him blood clots. Now he has one in his lung and leg I believe. They have him on blood thinners and placed a filter in his blood stream. I visited him after my post-op visit and he seemed to be hanging in there but of course wasn't happy to be in ICU which I can totally related to. He'd been there 2 weeks already and they said probably one more week for the clots to clear. He's on a lot of oxygen b/c the clot in his lung is making it hard to function and breathe. Unfortunetly, I heard today that he had gotten worse and they decided to put him on the VENT and keep him under sedation. Ugh! I feel his pain and fear! It really messes with you when you are on the vent and wake up days later wondering what's going on. He's such a nice guy and so is his wife. Breaks me up to see them or anyone in this kind of situation.

December Updates

2010-12-21T07:50:00.003-05:00

I haven't been posting as often b/c I'm not getting any comments so I'm guessing no one's reading this. But it's good for me to write and I want to continue it in case someone finds it one day and it can help them out in any way.
Was doing ok until I got some kinda of head/ sinus cold. I was blowing my nose like crazy and at night it would get stopped up. Good thing was I didn't run any fevers! I thought I was getting better but it was draining into my chest making me congested and my numbers went down some. Doctor had me come in and do a swab in my nostrils and throat. One nostril came back with the CMV virus that I got from my donor. The majority of people have it and don't know b/c it lays dormant until something causes it to at up. So the one doc put me on an anti-viral which my insurance didn't want to cover so that took some time to get over-rided by my doctor. Then, the other doctor comes back from vacation and I find out that not to worry yet b/c it's only a problem if it gets in my blood. So I had to go back in for bloodwork. Good news is it wasn't in my blood so they said nothing to worry about and don't need the meds.
Well, I still had something going on and it had gotten worse so I left messages and had to go back in the next week anyways for bloodwork for my Immunosuppressent levels. Got to talk to the my favorite doctor and he had me do a breathing test and checked me out. He could barely see up my nose it was so inflamed and full of crap. Then when he looked in my throat, he could see gunk draining in a thin line from my sinuses down to my lungs! He said my sinuses are horrible and said we needed to work on that first before cleaning out my lungs. So he told me to take Sudafed, Afrin, Benadryl, and put me on some antibiotics. I was actually able to cough some mucous up that was yellow for them to culture to see if any bacteria or anything else could be growing in my lungs. In my last few cultures over the months, I had one weak bug and one that was very resistant to just about every antibiotic...not good! He said it probably isn't that one b/c the one thing it's sensitive too is an inhaled antibiotic I have been on for several years. Seems to be the only antibiotic that bacteria rarely builds up a resistant too. So after a few days I got the call from clinic saying that it was neither bug and just a light growth of oral flora which is not uncommon to see since it's in everyone's mouth. My sinuses seem to be getting better and should be a ton better after my sinus surgery Jan 3rd and then later a bronch for my lungs.
I'm at least happy that it seems so far, I will be spending Christmas and New Years not in the hospital or severely sick and/or on oxygen!!

October update

2010-10-12T03:26:00.002-04:00

Well, I now have had 2 EGD's with dilation of my esophagus where my Nissen wrap was. Swallowing has improved FINALLY!!! It's still not normal or like it was before the transplant but much better at least. I'm off the anti-fungal, Vfend so of course my Prograff level went down WAY too much. They increased it and I go back in Wed. for another blood drawl to check my levels. Hopefully it will be ok so I don't have to go in again next week too. My last bronch in Aug. showed no fungus but some Psudamonas so my Colistin antibiotic has been increased to 3 times a day via nebulizer! Ugh! It's a temporary thing at least. At least my blood suger levels have gone down some after getting off the Vfend too. I've gotten a little more energy back since going off it too. It's so hard though to keep from getting a fungus b/c it's everywhere outside it's hard to avoid. I hope I at least get a good long break from it. I'm being more careful now in the yard by using a respirator but it's harder to breathe through it so I just don't get much done these days. I am getting spending some time refreshing and learning some more on some of the computer programs I learned in school but haven't used in years due to being sick. I am enjoying that at least and maybe one day I can take some refresher classes at school.
I continue to be amazed at some of the fat I have taken on this year. I never had any before b/c I was always under weight. I try to get some walking in at least 4 times a week and sometimes some other exercises but evidently I am not doing enough, haha. Still, I am happy with my weight. I'm around 117 which is more than I ever was before transplant. I still have a freaky hole in my stomach from the feding tube. Looks like an extra bellybutton. Don't like it at all.....kinda grosses me out, haha. I can handle all the other scars.
I don't think I have another appt. until early Nov. with the lung doctors. However, I did go in last week for my prograff levels and other bloodwork to see if something was up b/c of my constant fatigue. While I was there, I did a breathing test (PFT) for the research program on CYCLIST medication which I am not on drug. My FVC was 3.05 which is like 90% so that was great! Same number as last time or close to it. FEV1 was down some which I expected since it seems to be a constant thing with me after I get my bronchs. However, it didn't drop quite as much in that amount of time as it has in the past. So.....maybe...just maybe, things are starting to improve. I wonder if it has to do with getting the esophagus dilation.....being the theory stuff might have been backing up into my lungs b/c it couldn't get down fast enough due to the small opening. We'll see how things continue to go and if I start to see my build up of mucous go away, then we know it must have been the culprit. I have to add that even though I have been getting this mucous build up, it's nothing near as bad as before transplant. Also, I haven't coughed up any blood too. That has definately been a nice change since TX. I remember coughing up blood a lot the last couple of years before transplant. Pretty scary.
So things seem to be slowly improving. I still break down now and then thinking about all I have been through and worrying about having to go through it again. I just try not to think about it. I can usually talk to people about it without it getting to me emotionally but it's when I'm alone or trying to sleep at night or at the hospital when it really gets to me. It does get a little easier the further out I get and the longer I manage to stay out of the hospital. I'm trying to fill my head with some better experiences to remember. I managed to do that this weekend. The first time My boyfriend and I got to go out of town for fun for a change! I had a really great time and it felt really great to see how much some people/friends really care. I hope I can have many more weekends like this!

I year TX anniversary

2010-08-24T00:55:00.003-04:00

Yes, I made it one year from my double lung transplant on 08/08/2009! It's been a tough battle but things have improved and I am getting to do more stuff. I can drive now that I'm off my pain patch! Went swimming at the beach since my j-tube hole has closed, even though it is indented looking like a second bellybutton.
I had 1 day of a bunch of tests at TGH and the next day they did a bronch and lung biopsy. No rejection still! So they lowered my Prograff to 5mg, yippee! Bloodwork came back good, heart is good, bone density is slightly worse. Still waiting on cultures. They got a lot of junk out of my lungs which I knew was in there b/c my FEV1 had been going down...10% in 2 months! My breathing wasn't as well. At least this time, there was no brown junk in my lungs...it was white! So I guess that's an improvement. The docs think that it might be food backing up from the Nissen wrap being too tight but the GI docs don't think it's that. The Lung TX docs got me to meet with the GI doctor that would do the wrap dialation and the surgeon who did it to tell him how much to dialate it. Of course, they made me go through another round of barium swallow testing first. FINALLY, they decided that it was time to do something about it so I'm going in Aug.30th to get an EGD with dialation of my esphogus where the wrap is! I really hope this will improve my junky lung problem too! They are only going to do it a tiny bit b/c the GI surgeon would rather them have to do it 2 times than do it too much the first time and have to go in and surgically repair it. At least this will be out-patient! Let you know how it turns out.

Update July 19th

2010-07-19T17:01:00.002-04:00

Well, I cultered Aspergillis from the bronch they did almost 2 months ago. They have me on an anti-fungal called V-Fend 2 times daily. It's caused my Prograff levels and sugar levels to climbed so less Prograff and more insulin. Still have my swallowing issues but have spoken with one of the GI doctors about getting it stretched a little. Of course he wants me to meet with the GI surgeon who did the wrap and they can't see me till Aug. 20th. The Lung TX doctors don't think I need to see him and want to get this GI doctor to do the stretching. THe Lung TX doctors think that's why I keep getting a bunch of junk in my lungs b/c the food is sometimes not getting down fast enough and backing up ad going into my lungs. But, the GI doctor thinks it's something else. Ugh! So we'll just have to wait and see how this plays out. I finally got off my pain patch and I'm noticing the increased pain but am tolerating it. Being off it means I can finally drive again!!!! My hole from the J-tube still freaks me out b/c it looks like another bellybutton. I'm hoping it will heal a little more. Should be able to go swimming again! Best news is that my pulmonary Function Tests (PFT's) were a record for me! 90% on my FVC and 85% on my FEV1!! Now if only it would stay that way! I have been having headaches when I wake up in the morning which I hope doesn't mean I need another sinus clean-out. I have an appt. with the ENT on Friday so I will know then. I'm not allowed to do any gardening in the yard now b/c they believe that's where I picked up the fungus so I'm kinda down about that. But, things should be better now that I can drive and swim! Yeay!

Bronch June 15th

2010-06-16T21:31:00.002-04:00

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

2010-05-30T21:30:00.002-04:00

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....

2010-05-19T22:43:00.002-04:00

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!!

2010-04-30T00:26:00.002-04:00

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

2010-02-10T14:37:00.002-05:00

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!

2010-02-06T03:15:00.002-05:00

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

2010-01-08T17:53:00.011-05:00

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

2010-01-07T20:12:00.006-05:00

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

2009-12-30T21:38:00.005-05:00

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

2009-12-19T11:18:00.027-05:00

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

2009-12-10T11:54:00.002-05:00

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!

2009-12-04T17:35:00.003-05:00

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

2009-11-17T16:51:00.002-05:00

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!

2009-11-12T12:14:00.002-05:00

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

2009-10-14T13:39:00.001-04:00

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!!!

2009-10-10T13:24:00.003-04:00

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

2009-10-02T15:45:00.005-04:00

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!!!!

2009-09-29T20:49:00.002-04:00

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

2009-09-23T13:20:00.011-04:00

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

2009-09-19T19:16:00.011-04:00

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

2009-09-15T17:41:00.002-04:00

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

2009-09-13T11:06:00.002-04:00

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.

2009-09-09T12:48:00.004-04:00

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

2009-09-04T16:40:00.002-04:00

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

2009-08-31T00:43:00.003-04:00

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.

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

2009-08-27T12:33:00.002-04:00

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.

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

2009-08-23T17:03:00.002-04:00

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.

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

2009-08-21T10:54:00.003-04:00

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.

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

2009-08-19T11:41:00.002-04:00

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.

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

2009-08-17T19:43:00.000-04:00

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.

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

2009-08-15T21:49:00.000-04:00

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.

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

2009-08-13T22:09:00.000-04:00

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.

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

2009-08-12T20:01:00.000-04:00

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.

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

2009-08-11T22:21:00.000-04:00

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.

Mom

Dad

Lori

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

2009-08-11T00:43:00.000-04:00

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.

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

2009-08-09T22:28:00.000-04:00

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.

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

2009-08-08T20:57:00.001-04:00

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.

2009-07-30T23:40:00.000-04:00

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.

Update: 7/29/09

2009-07-29T10:33:00.000-04:00

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.

Fundraising

2009-06-24T12:59:00.000-04:00

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

Welcome!

2009-06-24T12:20:00.000-04:00

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.