Things are finally going better!

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!

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

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

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!!!

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

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

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

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

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

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

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

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

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

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.