My Double Lung Transplant

Saturday, August 29, 2009


Anastomies: the place where the donor lungs are attached to me.

Yesterday was my first out-patient x-ray, and was the first time i received an x-ray while a)completely lucid; b)without vomitting; c) without being wheeled in stoned out of my mind; and d) able to follow the instructions when placed infront of the xray machine unlike last week where i couldn't keep my eyes open.

In my clinic appt yesterday, i was able to see the xray. It's not completely clear yet, as to be expected, but the doc was thrilled with how things are looking and said that i'm several weeks ahead of most people! I did have to go for an unscheduled CT scan afterwards, as they saw a small pocket of fluid outside the lungs in the middle. He said it's not common, but that it's not unheard of and definitely nothing to worry about too much, so that made mehappy!

I also had PFTs. My last PFTs were a week before tx and came out at a wonderful low of 21%. As of yesterday, 1 day shy of being 3 weeks post tx, i DOUBLED my numbers and came in at 45%!!!!!!!!!!! I WAS ELATED! And so was the PFT guy, and my doc! Even tho it's 45%, it's 45% i have NEVER had!!!!!!!!!!!!!!!!! *jumps up and down and doesn't get out of breath!*

But anywho, back to the title of this blog. Mum and I were sitting in clinic, i was excited for no real reason ( i spent half the morning stoned out of my mind on T2 b/c each day i get more sensation back and thus the pain is more intense) i was really happy, when my doc suggests we look at the xray. I was kind of concerned b/c it was a little fuzzy - which i was assured was normal being so close to being out of surgery and all - and he said everything looked great. I immediately noticed all the squiggly things in my lungs: the wire holding my sternum closed (thanks Cassie for informing me that they 'cranked' my chest open with a 'saw'), and saw where all the stitching and 'anastomies' are that attach the donor lungs to me. I thought there'd be 3 or 4, but no, there are SEVERAL and they look scary and painful and everytime i cough and get a jolt of pain all i can do is visualize one of these squiggly things holding me together. Ironically, it's not the external factor of being imminently ripped open at the seams that bother's the internal of falling apart and not knowing b/c i only have slight sensation.

But anywho...that's my irrational rationalization. My pain today has been a lot better and i've only taken T2 when i woke up, and then again at 7! Since it is cooling off earlier now (summer ripped us off this year!), i find i am more sensitive to cool weather. I can't shiver b/c it hurts my sternum, so i have to stay warm. Tonight it finally dawned on me to use a heating pad on my back and boy has that helped! Heating pad, plus Irish Breakfast Tea, plus Colin and Justin Home Heist on BBC, plus TLC, meds and MSN, and my nights been grand!

Slept great lastnight after a horrible Thurs night. Did i write about that? Maybe i should now. Thurs night was terrible. Jesus God. I went to bed at 10:30 thinking i'd get a good nights sleep. WOW was i wrong. With the incision being where it is, getting comfy in bed is hard b/c you can only sleep on your back and you can't sleep in any demented positions as i enjoy doing. You can't use your arms or stomach to move and you have to essentially crab walk your way off the mattress and onto the floor if you ever want to get out of bed. So i was laying there, miserable that i couldn't get comfy, when i stopped breathing.

I remember doing this in the ICU. I'd fall back into my old breathing habit of breathing with my stomach and then i'd just stop breathing. I had to remind myself to breathe with my lungs and now with my chest, and that i was totally fine and that my lungs were good and working well. I know it's psychological and that it's pretty normal to experience this, but it kept me up for a good 3 hours. I finally fell asleep and had a dream about an old fav 90's band and a bomb in a school, when i woke up again. I cracked and took some ventolin (which is allowed) and felt better, as it calmed me down. I turned my iPod on to help take my mind off my breathing and as a result i slept on and off but kept singing to my iPod for another 4 hours. I finally woke up at 3:50 and wrote in my journal, and had a snack, and took some T2. I subsequently spent the next 4 hours in a state of semi-conscious misery and spent the morning meandering the hospital incredibly high from all the T2 i had taken.

But alas, here I am, 2 days later in a much happier state!

Hope you're all well!


Meghann "Former Queen of the O2 People" said...

Don't worry girl! You'll be able to get in and out of bed a lot easier soon!! And take all the pain meds you want!! Thats what they are there for! :)

Amy said...

So glad to hear your PFTs are up! You are higher than me! Wow that's amazing :) So happy for you Bree!!!!!!!!!!!!!!!! <3

Love ya gal!

Wish2Breathe said...

Wonderful so thrilled about your PFTs, and as meghann said you will be able to get in and out of bed a lot easier in the coming weeks. I think it took me a good month to be able to maneuver easier. After this experience you may just find you can sleep easier on your back vs other ways.

I was the same way never sleeping on my back now it is pretty much the easiest way for me to fall asleep at night ... I don't stay that way of course but oh well.


Jess said...

Those PFTs are great! So jealous. Hope things keep getting better! Were you culturing anything in your lungs before transplant? I know you have brochiectasis, not CF, but I'm not sure if that means you culture things in there.