Wednesday, December 27, 2017

2017 wrap-up... becoming an aunt, a dry-run/fake transplant, and finally a transplant

Today is exactly a month since I was discharged from hospital, and just over 8 weeks since transplant. My lungs are doing great so far, and I believe that they will continue doing so. There are still some annoyances regarding medication levels and kidneys to sort out. Hemoglobin (basically iron levels) is FINALLY normal again. Yay for small victories. Definitely feeling a bit of anxiety as it's been 2 weeks since lung function and still a while to go before that next check-up. Hopefully this kind of anxiety will go away. It will also help when my friends are back from holiday and I am busier again to prevent me from thinking too much! And when the Jan biopsy is behind me. There will probably be a hysterectomy early in the year as well, as my gynae has wanted to do this before but my lungs were too weak for the surgery and it would have been too risky. Ugh. Just have to get it over with.

My transplant that went so well was a miracle for many reasons, but especially because I started losing hope of a donor towards the end. I got a call for lungs in the middle of the year as well... I haven't blogged about this before for various reasons. I was called at 23:30... and told to be at hosp by 2am. We called everyone and met my parents at the hospital, very much like when the transplant finally happened. I was taken to theatre at about 10:00 or so, super excited. About an hour or so later (I can't remember what time it was at all) I was woken up again. The lungs weren't good. They took out the central line and arterial line and sent me back to the ward. I was devastated. Obviously I didn't want lungs that my Drs weren't happy with, but I felt heart-broken that they weren't good enough. I was especially bummed about it in Aug when I was super sick and in hospital plus picked up a new bug... I kept thinking that I wouldn't be in that situation if that transplant had worked out. It did however make me feel like lungs would come "soon" though... although in the end months passed and this wasn't the case. So as the year started coming to an end, I was convinced that 2017 would not be my year.

I didn't blog much this year compared to previous years. In fact I basically did half as many posts as previous quiet years, mainly due to lack of things to blog about because my life was pretty boring. A post that was significant though is this one that I wrote about 6 weeks before the lungs came. That post basically sums up my year. I know my health could still have gone a lot worse before transplant, but I'm so glad it didn't. One of the reasons I had such a great recovery is because I wasn't too weak. Even though I was suffering. But the suffering could have been way worse...

Back to 27 Dec 2017 though... Something exciting that I did last week was to JOIN THE GYM AGAIN!!! I probably won't be able to go in Jan, when all the "new-years resolution" people are there, but at least I've been able to play some squash before the year was done! Chris and I went to play on Friday and it was great! My squash-stamina is obviously crap, but once I got into it, the technique started coming naturally again! I just took a look at all posts with the label "resolutions" and found this one regarding exercise that I wrote in July this year. How lucky am I to be able to get another chance and make this a reality? I will always look back at that post when I'm feeling lazy for exercise.

Christmas was nice, my gran is here. Chrislie and Pierre was down in PE, but they're back now. SO nice to see Adriaan again. That little boy and my new lungs were the highlights of 2017 by far. On Christmas Eve my thoughts were occupied with sadness and sympathy for my donor's family and Siobhan's family. My heart is breaking for both of those families at the moment.

Not much planned for the rest of 2017... exercising, spending time with family and chilling at home. Will be glad when 2018 starts and everyone is back. Thank you to EVERYONE who supported me this year... Chris, who has been a rock. My parents and sister who has been there for me my whole life and who WILL always be there for me no matter what. The friends who made the bad times better (and I am lucky to have quite a few of those!!). The LLGL girls, who truly understand what it's like waiting for a transplant and share my passion for organ donation awareness and get just as angry as I do when there is bad publicity or untrue facts get published. My awesome friends in the medical field, you know who you are - for making hospital times easier and believing in me. My lung Dr, Paul Williams.... who has endured 11 years of me giving him a hard time (sometimes) and somehow hasn't fired me as a patient yet, instead he has been there for replacing my lungs twice and have my best interests at heart. And obviously the rest of the army of Drs and other medical staff I've dealt with during the year. I wouldn't have been here without everyone's input. Hope I didn't forget anyone... if I did... I blame the meds.

Tuesday, December 19, 2017


Life has been pretty fantastically busy since my last post. The most exciting news is that my lung function was up quite a bit at Thursday's appointment, and is almost in the "normal person" range. (well the FEV1% that is). Dr was super happy. My next appointment is only on the 5th of Jan due to the holidays, so I've jumped from seeing him every 7 days to a 22 day gap! It's a little scary! Will still be doing bloods every week though. Something else that's been super awesome is that I've been able to go for little runs!!!! Before now I still had some pain, so running wasn't possible, but I'm 99% pain-free now... tried running last week and it felt amazing! The lungs just want to keep going but my legs are still lacking a lot of strength... so that needs work.

I have also bought new squash shoes today! I gave away my old squash shoes because a) I wasn't sure if I would ever be using them again, and b) they were quite old, so I figured that if I didn't die and was going to play squash again I deserved a new pair! So a new pair it was!

It's also been pretty great having the cats back. They've been very well behaved and have adjusted to the fact that all bedrooms are out of bounds. Home feels like home again. I've been spending my time doing stuff around the house, sorting out medication (with dosages of meds changing every week so far it's been a bit crazy), sorting out medical accounts, making Drs appointments for next year, sorting out xmas pressies, catching up on LLGL stuff etc.

We don't really have any Christmas plans apart from lunch at my parents house and supper at our place on New Years Eve. Hopefully next year we'll be doing something different somewhere else! Just super grateful I can breathe!

Sunday, December 10, 2017

RIP Siobhan

Last week Wednesday my good friend, fellow CF sufferer, fellow lung transplantee and LLGL co-founder Siobhan passed away after more than a month in hosp and a few months of worrying health. Her memorial was yesterday and I believe that she would have been satisfied.

I'm not really sure where to start on how much we will miss her or how sad I am because it doesn't feel real yet. It should probably feel more real seeing as my transplant was a day after she was admitted for a biopsy. so I was in hosp with her for most of everything. I got to see her once, briefly, when I walked past her room while walking with the physio. There were also 3 or 4 days where we both had a phone and were awake. I wish I could show her that I'm so much better with the new lungs, and celebrate with her. Her transplant was 2 years ago, and I missed a lot of her milestones due to my declining lungs... missed her 30th, missed her first lungaversary. In short, I couldn't keep up with her.

At Fawn's birthday in June, we had such a great time, because I went "out" for a change, and Siobhan and Andrew kept me company by the plug point/electricity for my oxygen. She introduced the topic of the "#death-crutch", or we stumbled upon it or something. It's the idea that because you're dying, you can get away with being brutally honest, or selfish, and people can't really argue with you because you're dying. We subsequently went through a whole bunch of examples of where it could be fun to be brutally honest and how hard it would be if I got new lungs and actually had to make an effort to be nice to people and stop being brutally honest again like normal people.

It was her memorial yesterday, and it was a really beautiful day in between lots of rain that we've been having. So the weather and venue was perfect. The poem she chose was really lovely (yes I think we all roughly plan our funerals/memorials when you get older with this shitty disease... I have a funeral playlist in my head and Siobhan def stole some of the ideas :-p

Ii other news... I was also on the radio last week... on a show called The Good Stuff on Cliffcentral. Listen to the interview here. My interview is after minute 28...

My Dr's visit on Thursday went well too. all lung functions up a bit, x-ray looks good, bloods not perfect yet but we're working on it, Prograf dose was adjusted slightly, iron levels still low... have started eating chicken livers now! As from today cortisone dose is back to normal!!!! Yayness! Good ol' 7.5mg. Let's hope the slightly added cheeks disappear now. And the random high sugars. Have a great week.

Monday, December 4, 2017

First Full Week Home

I was officially discharged from hospital a week ago. My first week at home has been great. I haven't seen the kitties yet as they were sent to the cattery in order for the house to be fully cleaned and to be away from me for a period of time. They will be coming home soon though, but there will be some new rules in place for them.

My last Dr's check-up went really well, everything is going great. I should have another check-up on Thursday. The biopsy results from last Monday also showed no rejection so far. I will be having biopsies at 1,2,3, and 6 months post transplant. The black and white pic below was taken by radiology during the biopsy.

It's been great seeing family outside of hospital. And I got to properly play with Adriaan again! He still remembers me! He has grown so much in this month that I haven't seen him, it's insane!

I try to go for a walk with Chris on most days to work on my fitness and hopefully increase my lung function. Will also be going back to bio from tomorrow. Oh and I can also start driving again, yay! Been missing my independence a lot. Took some pics while walking, just cos JHB is looking so pretty after a whole bunch of rain we've had. (sorry Cape Town). My lungs want me to start running to really feel the maximum brilliance of the lungs, but my groin and ribs say NO!!!

Yesterday Chris and I went out for breakfast, after picking up a whole lot of medication from the hosp! We then chilled with some friends for the rest of the day next to the pool, making the most of the warm weather, as this week is supposed to be cold and rainy. (Yes I wore SPF 50 and didn't actually swim... lungs feel so ready though but body still as aches and pains). Thanks you for everyone's nice messages, I really appreciate all of them.