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.
