Monday, March 27, 2017

I know it's been a long time since I have posted but things have been running pretty smoothly. I have started to see a decline in lung function down to 88% but still considered good. However, this is an indication of possible chronic rejection or lung infection. I really don't believe it is lung infection....plus I am on 3 antibiotics a day. Doctor may do I bronchoscopy with biopsy if my numbers aren't better by next appointment. I have been very lucky to have made it this long without any known rejection. Still, it scares me.

Another update is I have a new doctor due to Tampa General getting rid of private practice doctors which included my doctors so they have disbanded and moved away except for one. I chose to see a transplant doctor here in Orlando....oh yea, I moved to Orlando almost 3 years ago. My favorite doctor who was there from the beginning moved to Louisiana. Broke my heart! I was so depressed as the doctors and coordinators become like family. However, I felt so much better when a few months later I got a friends request on FaceBook from my doctor!!! I never expected that b/c I know he hates typing, haha. What's so great is that I can contact him on there and most of the time get an instant reply! The new doctor in Orlando seems nice but they do some things a little differently and some of those things I don't care for.....like more blood work and x-rays. They haven't been around as long as my clinic and doctor in Tampa were. Also, currently my Medicaid is not accepted there so I am getting co-pays on everything I do which has added up. I as not expecting this. I can't change my Medicaid plan till Aug.

Another tid bit....About a year ago I had a mass in my groin area taken out to check to make sure it was not cancer. Good news was it wasn't and was only a lypoma(fat). Bad news was that I had a bad reaction to the anesthesia.  Non-stop vomiting and lower chest pain. Went to the ER in Orlando, did a bunch of tests and thought it was my gallbladder so they sent me by ambulance to my doctors at Tampa General. I was feeling better by then but they wanted more tests. My liver function was severely high and I had "sludge" in my gallbladder with slight dilation. Well, my gallbladder has been like that for at least a few years but the gallbladder surgeon didn't bother to read my records or everwhat was going on and just talked about taking it out in a few weeks. My lung tx doctor I had talked to right before said he was putting me on a med to see if it helped but the surgeon didn't even see that or know until I told him about it.
Before all this, I had felt like my body was shutting down and was crying b/c I was so hungry and thought I might die. It had been almost 3 days since I got to eat b/c the night, morning, and afternoon I was not allowed to eat before my initial surgery for the mass (which had gotten delayed), then threw everything up I tried to eat after surgery and then couldn't eat b/c of another possible surgery.  I begged for food and was denied so I begged for a piece of candy later to at least suck on and then the doc decided to finally let me eat and if surgery was needed it could be done later b/c at least my liver number had gone down but was still far from normal. So fast forward a couple weeks and I go see the surgeon who did the surgery to remove the mass (who I believe was also a liver surgeon) and told him what happened. He looked at my chart and said it looks like I just had a bad reaction to the anesthetic. What!? I just about had my gallbladder taken out for no reason!!! I was so relieved and so upset at the same time. I have not had any problem since! I believe the chest/ abdomen pain I had was from throwing up through my Nissen stomach wrap I had for reflux. I have not been able to throw up since I had that surgery but I was so sick this time that it actually happened. It wasn't used to opening up that wide in reverse. Even sometimes when I eat things still have a hard time going down. I'm just sooooooo glad I didn't have to have another stomach surgery after how much mine got messed up from the Nissen!!! Plus any surgery with a suppressed immune system is scary! So I've had no more problems in that area other than the pain from gastroparesis.

Life continues to be stressful and challenging but I am still hanging on! I am thankful for the good people I have in my life! I'll try to remember to post an update on my lung issues in a couple months.

Sunday, June 30, 2013

Smooth Sailing

Well, in August, I will be celebrating my 4 years with new lungs! Amazing! I've been very lucky to not have had any rejection yet! My stomach is still a mess but the meds help a little. My weight has been maintaining but still under weight. My sinuses continue to give me some problems with drainage, polyps, and headaches. Usually get sinus surgery once a year. The stuff drains into my lungs and makes them a little junky and it's very hard to cough up. Very annoying feeling it in there blocking an airway. Somehow my lung function tests are great though! Very happy that my biopsy I had a few months back showed that I don't have cancer yet! So glad I am healthy enough to be flying up to Ohio tomorrow to see my family!

Sunday, March 17, 2013

Unfortunate news....found out I contracted a virus that could become cancer. Going in Monday morning to get a biopsy. I am a total mess.

Friday, August 17, 2012

3 year post transplant anniversary!

Well, I've made it 3 years now! Things have improved over the years but I still continously face challenges. My lungs seem to be stable at least. Had sinus surgery that went well. Got a lot of junk out and cut out some polyps. Cultured a weak bug that I am being treated for with antibiotics. Fungal growth showed up too but still waiting to find out what kind. Blood work came back good! My main problem is my stomach. Seems here and there I get gastroparesis AKA lazy stomach. The stomach just slows down digesting and food builds up in my stomach and causes a lot of pain and nausea. It's usually better by the morning but that means too much pain for too long! Sometimes I'll take laxatives for it that help some. Also, I had a CT done on my stomach that shows some sludge in my gallbladder and that it and my liver are dialated. I recently did a MRI so they can check it out more. Still waiting to hear back on that. Hoping I don't have to have surgery to get my gallbladder taken out! Ugh!
      The toughest thing I have had to deal with this year is the passing of my lung transplant friend, Missy. I visited her after my sinus surgery when she was in the hospital and not doing well from rejection. She passed away 2 days later. We were both the same age and she had her transplant not a whole lot longer than me. Very sad and scary :(  My heart is still broken from losing her. Being friends with lung transplant people is helpful but sad and heartbreaking at times. I'm glad there is a new med in trials that seems to be helping out a lot for CF sufferers to breathe better and hopefully prolong their lives before needing a transplant. It's a tough life!!! I don't know if I could make it without my family and friends. I try to get out once in a while and have some fun at least. My dogs keep me smiling.

Thursday, March 22, 2012

Stable Times!!!

My lung function has been doing well around 85 - 90% for the last few months!!! I've finally gotten my weight up to 107 but the doc still wants me to put on more weight. I'm doing a little more and driving more but still have my days of no energy. I've been able to make the 2 hour drive by myself to see my friends in Orlando too! I still have some congestion I can hear in my lungs but can't get it coughed up. The docs don't seem to be worried though since my breathing tests are going well. All my other vitals are ok too. My resting heart rate used to me in the 90's and even lower 100's for many years and now at rest it's lower 90's or even as low as upper 80's!!! I still have some sinus issues but they aren't bugging me too much. I know I have polyps that will need to get cut out sometime this year. Haven't had any bronchoscopy this year yet and hopefully won't until my 3 year annual exam! Looking forward to the transplant Bar-B-Q this year. I am sooo thankful to finally be in a place where I can start enjoying my new life!!!!!!!! Thanks to all my supporters and friends and family!!!

Friday, November 11, 2011

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.

Friday, July 22, 2011

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.

Saturday, May 21, 2011

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.

Thursday, May 12, 2011

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! :(

Friday, April 29, 2011

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!

Thursday, February 10, 2011

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?!

Thursday, January 20, 2011

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

Monday, January 17, 2011

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!

Thursday, January 13, 2011

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.