My Double Lung Transplant

Wednesday, July 30, 2008

It's all pretty bullshit

The last 3 days have been horrible. Absolutely dreadful, completely horrible, and riddled with pain. I woke up Monday morning with terrible soreness in my chest, like an infection was brewing much like coffee in a pot. I didn't think much of it, but i remember feeling the old wickets of my ribs were rusty like old hinges, and breathing in was a numbing effort. It was bad enough that I mentioned it at physio and they said it's common with bronchiectasis, and there isn't much to do for it but take Motrin (or get higher than fuck) and take it easy. They suggested it could be pleurisy. Joy.

Yesterday I woke up feeling like I got shot. The pain had grown expenentially and it even hurt to extend my right arm infront of me. It wasn't muscle pain, b/c i could touch my right side (where the pain is) and from the exterior, i felt fine. It was internally that it hurt. It's from above my right boob, under my arm, and then in my back shoulder. To breathe in even lightly, to sneeze, to laugh, to yawn, it hurts and stings. Much like when a firework goes off: it starts off in a single area, and then explodes and spreads and rips through any surrounding area. That it was it feels like. I'm assuming it's fairly similar to being shot. And it sucks.

I woke up today still feeling like i've been shot, if not a little better. I had clinic and I went, and found out a lot more than i bargained for. Firstly, i mentioned my terrible pain (which as of now, has surpassed the sensation of feeling like i've been shot and has taken on the feeling of being shot with a musket ball). They said it could be pleuisy so after the appt i was sent down for an xray. I hope they call tomorrow to tell me what the hell it is they saw! Then! Things went in another direction, to that stupid fucking esphoageal test i had 2 weeks ago (the one that made me choke and gag, and cough and cry and vomit all over everyone). I didn't just fail it: I failed it ROYALLY. Apparently, it's so bad that i can't even swallow.

Nope, no lie. When you swallow your throat goes through a succession of waves, but with me that apparently doesn't happen (which i find to be BS since i eat and i put on weight and im fine so obviously i'm swallowing!). Apparently with me it must get stuck and slides down, which puts me at risk to asperating food into my lungs post tx (which can lead to rejection, not good). So they're informing me of this, and they mention the only way of treating is is to put in a FEEDING TUBE (they didn't say for how long) and didn't explain any further really (b/c they don't have answers until i meet with some GI specialist) b/c they saw me trying to control myself from slipping into a fit of rage and shrieking like a banshee, attempting to stab and kill people.

I brought the idea of esphoagus tx to the table, which apparently has never been done and i offered to be the first.

NOT BEING ABLE TO SWALLOW?! ARE YOU SHITTING ME?! I promptly went downstairs and ate a bagel just to prove that I could. So we'll see how it goes. I'm not as outraged as i was; i had the opportunity to sleep it off on the bus, as i slid sideways to the person beside me with my mouth wide open making strange sounds. It's not so bad but it still sucks. And i'm still in a lot of pain in the lungular regions. And it sucks.

And i've been listed for 3 months as of yesterday, and that is all.


Alice said...

Oh NO Bree that sucks!!!! The stupid arseholes, how can they say you can't swallow???? They should just leave it, and IF ot's a prob post tx THEN try do something about it. Hope the pain getts better!!!

Gizela said...

Dear Bree,
I still pray that you will get better. You are very brave and I have lots of respect for you.
Goodluck with everything you are going through.
May you have a lovely day and an unexpected phonecall.
Regards from SA

don said...

yeah... sorry you feeling bad. =( still enjoying your blog, though. you've got a good sense of twisted humor which I love! Hope you get the call soon!!

Don, SA

Candi said...

Having a feeding tube isn't so bad. I have a j-tube (goes into my intestine). (a G-tube, goes into the stomach). Anyway, with the feeding tube you won't be aspirating into your new lungs. Ask your doctors that when you get your lung transplant if they will do a Nissen Fundoplication on you, this is where they take the esophagus and wrap part of the upper stomach around it. This prevents you from aspirating into the lungs. I had this done after my double lung transplant to prevent aspiration of food into the lungs. Studies show that this procedure reduces the chance of having rejection episode.

I can still eat whatever I want with the feeding tube. The feeding tube will also help you for after transplant, as your medicine can get crushed up and they can push it through your feeding tube, so you don't have to swallow a bunch of pills. It will also help you if you get gastroparesis from the transplant surgery. Its when the stomach nerve is damaged during the transplant surgery and it makes your stomach not digest normally and makes you nauseated and can't keep anything down. This happens a lot with double lung transplants and heart transplants, and they are now seeing it in liver transplants.

I hope that your doctors find a solution that works for you. If you get the feeding tube, hopefully its not for long! Praying that you get your lungs soon! Keep on truckin'!