Tuesday, December 21, 2010

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!!

Tuesday, October 12, 2010

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!

Tuesday, August 24, 2010

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.

Monday, July 19, 2010

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!

Wednesday, June 16, 2010

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.

Sunday, May 30, 2010

Surgery on Tuesday

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

Wednesday, May 19, 2010

It's all good....

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

Friday, April 30, 2010

So much craziness!!

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

Wednesday, February 10, 2010

Good and Bad news

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

Saturday, February 6, 2010

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

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

Friday, January 8, 2010

Jan. 8th Hospital Update

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

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

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

Sinus surgery recovery room

From Tanya's nose

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

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

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

How beautiful!!

Thursday, January 7, 2010

Jan. 7th Hospital Update

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

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

I'm going to finish this tomorrow.