Saturday, March 31, 2018

Addo Elephant Park Pics

We spent most of the 22nd at Addo. It's always great going there for Ellie sightings. We've seen lions there before too, but unfortunately not this time! The highlight was watching some elephants take a leisurely bath!

Thursday, March 15, 2018

Biopsy results and New Look for the blog!

Firstly, I changed the look of the blog a bit... hope you like it! Secondly, my third biopsy was NORMAL!!! Whoop whoop! Well done lungies on being brilliant and immune system on being dumb! The lump that was removed was scar tissue basically. Hopefully there are no further strange scar tissue lumps.

Another big "thing" for me is that I slept without a sleeping pill (willingly) for the first time since July 2013 last night. There was one night where I couldn't take one because I had forgotten it at home and we slept in Dullstroom. I have come down to a quater pill since the end of January when we were in Ballito, and now I'm stopping. I'm not against taking half a pill in extreme circumstances (like when in hospital), but I don't want to be reliant on them anymore. I started taking it when my chronic rejection progressed rather quickly at a certain point and we were waiting for photopheresis approval. I also started anxiety meds then, and it all worked together well. However now it's time to let the sleeping pills go. The meds I'm on makes it harder to sleep, but for the first five years of my first transplant I managed to sleep fine without any help, so hoping to go back to that. And goodness knows my kidneys don't need extra meds to process.

Something interesting.... with my old CF lungs, I had quite a bit of clubbing. Not as bad as these pics on Wikipedia, but still significant. However after my transplant it basically went away completely. It returned again a little bit when my previous lungs got quite bad. Now it's going away again... if you look closely at the above pic, you can see how it's "growing out", and the new nail is flatter. This ib not super scientific, but just my observation. Very interesting and cool. 

On Sunday we celebrated my dad's birthday. It was a great day, with little Adriaan stealing the show as usual! On Saturday we're leaving Jozi for two weeks!!! We're going down to East London for 3 night to visit my cousin, then to PE for 4 nights to catch up with friends etc, and then STORMS RIVER MOUTH!!!! The ultimate place of  holidays, love, hiking, forest and ocean! We will be there for 6 nights. I have been looking forward to this for AGES, and it was a big motivational goal during the wait for lungs and my transplant. My "Happy Place".

Thursday, March 8, 2018

Dad's birthday, Biopsy and Lump-thingy

Firstly, yesterday was my dad's birthday!!! We'll be celebrating with lunch on Sunday! He's the best dad we could ask for! It might sound like a cliche but it's true!

On Monday I had a lung check-up. I was a bit worried about my lung function because I've been a bit sick since Friday with a head-cold. I didn't thing that it had gone to my lungs but it's the first time with these lungs that I've been "sick". To my surprise the lung function was up by 2%! Yayness!!!! And my CRP was only 11 (infection marker... 11 is low). X-ray and rest of bloods were fine too.

So about a month ago I felt a strange lump just above my scar on the left side. Like a little movable "ball". Quite freaky to be honest. With my appointment 2 weeks ago my Dr said we can just keep an eye on it. It had been feeling bigger for the last few days and Dr confirmed it on Monday, and said it has to be removed asap. He wasn't sure what it was, but glad he decided to have it removed, because things that move on your rib cage feels strange. So it was scheduled for yesterday, along with a biopsy while I was in theatre anyway. (If it hadn't been for the alien lump we would have skipped the biopsy for now, seeing as lungs are doing well.)

Everything went well. Biopsy was fine. Woke up with a pressure bandage where the lump was but no pain at least. Had to spend the night in hospital as there was quite a lot of bleeding apparently with the removal. The initial verdict is that it is a stitch that my body had reacted to and had scar tissue formed around it. Hopefully it doesn't happen with more stitches?? I don't even know where exactly it came from! Apparently there is also a very tiny one on the far left side close to my armpit but it's so small my body "will take care of it"... Alien lump was sent off to pathologists. A new scar!

As I was admitted to my room (my lucky room that I was in after both my transplants!), they took my vitals, and seeing 100% O2 sats is so cool. Actually I think this is also a really "lenient" machine, as my sats are normally 97% or something, but it was great to see. I'll take a friendly monitor like this any day! Plus it can't be TOO far off, it's used in a hospital! The x-ray below was from when I was in recovery. You can see where the pressure bandages were on the right side of the x-ray picture (so over left lung).   

Bandages are off now, just some micro-pore tape over the new (dissolvable!!!) stitches. Hopefully the biopsy results come back great, like with the previous two. Not much other news really, but think this enough for a proper update!