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!

Sunday, February 25, 2018

Catch up!

Wow I haven't blogged in a while! The past three weeks have been rather action packed with medical stuffs, family visiting from the UK, Love Life; Gift Life, exercising, seeing my nephew whenever I can...

Medical updates: First, very good news regarding my cervix... no hysterectomy needed!!! Two years ago my gynae was considering performing a hysterectomy due to previous procedures as a result of abnormal cells. Back then my lungs were too bad to perform the operation, so I've just been seeing her every 3 months to keep an eye on it. Thank goodness there hasn't been any issues since then... you don't need cervical cancer when waiting for new lungs! Early this month I went back to see her... with great lungs... expecting her to say it's a great time for surgery NOW. She said that she was hesitant to do it, as it's a big surgery, and for the last year and a half my pap smears have been normal.She said that we'd see what the results show this time and make a decision, after discussion with my lung Dr. Well it came back normal, plus "previous abnormalities were not seem"!!! That's brilliant news, and means I can go back onto Everolimus (Certican) in about two months' time. Certican is an anti-rejection drug, but also used for cancer treatment. I've been on it for about the last 4.5 years leading up to my second transplant. The only downside to it is that it prevents healing, which is not an issue if you're not having any big surgeries! It's also much better for the kidneys, so I am excited for changing back to it. In the meantime, my Advagraf levels are FINALLY where we want them to be, with 17mg Advagraf daily. It makes me super shaky, makes my blood sugar higher, and my kidneys hate it, but for now it's the best drug to be on. Below is my morning pills...

On 8 Feb it was 100 days since transplant. It's an important milestone! Yay!!! My lung function dropped a tiny bit in the last 3 weeks, but my Dr doesn't think it's significant and not worried about it. He sent me for a CT scan as well and it was perfect apparently. I'm having a routine biopsy again in about a week and a half's time as well as a Barium Swallow test to make sure there's no reflux. Hopefully the biopsy will also go well like the previous 2. I've been experiencing some anxiety these last 3 weeks as a result of this tiny drop in LF, and friends who have been experiencing rejection lately. Also the higher Tacrolimus levels (Advagraf) can make you anxious. I'm trying to be more relaxed about it all now, and just enjoying the breathing. Esp since worrying might actually CAUSE rejection! It's kind of hard at times being the only redo transplant patient in SA, as no one REALLY gets my health stresses. And decisions regarding my treatment and tests get changed often. Hopefully one day there will be another redo transplant patient and I would be able to be there for them, and be able to put their mind at ease.

My favourite aunt and uncle from England popped by for a visit on the way back from my cousin's wedding. It was so cool to see them again, and talk about our next visit to them! They have recently moved from just outside London towards the direction of Newcastle. That's where the 2019 World Transplant Games will be! Really hoping I'll be participating!

I've also loved every second with my nephew Adriaan... he is growing up so fast!!!! Love that little boy so much! Happiest baby ever! Such a proud aunt!

Tuesday, February 6, 2018

Ballito (part 2)

On the Monday morning in Ballito I had to go for bloods, as my Dr switched me from Prograf to Advagraf the week before (Prograf levels suddenly went crazy high and my kidneys are struggling!!!, so we're trying this.). I went to Gateway Private Hosp in Umhlanga, as it's a transplant hospital (so they are more likely to know what "Tacrolimus" is), and met up with a few transplant friends. The weather wasn't great anyway, so no beach time missed. Verdict on the Advagraf levels... it was way too low and has been increased twice since then! Having it tested again tomorrow. My veins hate me.

On Tueday we went to an amazing beach - Thompson's Beach! The sea was way too rough to swim in, but there was an amazing tidal pool and the "Hole in the Wall".

On Wednesday we went to the nicest coffee shop in a small bit of indigenous forest that the owners have rehabilitated. Waterberry Cafe. You can take a walk in the forest and we saw a Blue Duiker! Very cool. We also went to The Litchi Orchard which is has some SUPER cute shops including a nursery. ended up buying 3 plants, some baby/children's clothes and one or two decor items for the lounge. On Thursday we drove back after an amazing 6 days! It was just what we needed after many months/years of medical drama and a much reduced quality of life. May there be many more such holidays!!!

Saturday, February 3, 2018

Ballito!!! (part 1)

Our Ballito holiday was amazing! Driving out of JHB was such a cool feeling :-) And nothing beats the first breath of sea air when you open the car door upon arrival!!! We arrived late afternoon so there was that misty sea haze and the sun was just about setting. Our accommodation was freaking amazing... RIGHT on the beach!! It's called Sea Cottages, and we would definitely highly recommend it! It's not like some of the other North Coast accommodation that is super commercialised and can't have a very "I'm at the beach" feeling. This felt like an old school beach house! We immediately went down and took it all in. Put my feet in the ocean.... had a walk, took pictures!!!

Saturday was our first beach day. We soon found out that swimming in the sea is a tricky business... this was not PE!!! The sea was SUPER rough and the slope of the beach pretty intense. In the end we swam mostly in tidal pools like some of the ones above, with some protection against the waves. And of course in our very awesome little pool in front of our cottage. The feeling of the sun on you after you come out of the sea felt like heaven. (yes I wore SPF50 all the time). It was never cold, even when raining... real sub-tropical weather. My hair hated it LOL.

We were actually planning this trip for October last year, when I was still waiting for lungs.Even though it's quite a drive from Joburg, my Dr had agreed that it would do both of us good to get away, as we hadn't had a proper holiday in AGES. I had already bought a new bikini and sunhat, and we were about to pay the deposit, when I got the call for lungs! In the rush to get ready for theatre we managed to cancel the booking! How much better it was now with the new breathers!!! Walking on the beach was a piece of cake lung-wise, although my calf muscles didn't think so. Swimming was a non-issue. Everything was SO EASY! Got a few stares as a result of looking like a bit of a voodoo doll with all my scars (18 scars from drains and my Nissen surgery on my tummy and lower ribs, plus the actual transplant scars, and a big cut down my groin where the ECMO was in during theatre), but it really doesn't bother me in the least.