Wednesday, January 17, 2018

11 Weeks and we're going on holiday soon!

Firstly, my biopsy results were NORMAL! Thank goodness. Saw Dr yesterday, lung function exactly the same as last time. Hopefully it does still go up some more. Bloods were fine except for Tacrolimus levels (Prograf meds). It's more than double what it should be, so I'm changing to Advagraf. As a result of the high Prograf levels my kidneys weren't happy at all. I feel so sorry for them! Took a picture of my pretty x-ray on my Dr;s computer screen. There was some bad reflection but it's better than the biopsy pic I took last week. Still not a great quality image.


This past weekend was just spent with family. Adriaan is SOOOO CUTE right now, he just makes you crumble inside with love. Chrislie and I went to the Botanical Gardens/Emmarentia dam with him again on Sat, and on Sunday we all ate at my parents' house.





Exciting news.... we're going to Ballito in 9 days' time!!!! I CANNOT WAIT!!! I haven't swam in the sea since Apr 2013! IT'S TIME!!!! And the sea is nice and warm there! We're going for 6 nights. We will be staying 15m from the beach.Counting the days!

Wednesday, January 10, 2018

Fun in the Sun and a Biopsy

I've passed the 10 week post transplant mark, yay! Every week that goes week is a good sign! I've spent some great time outside with family this past week. My sister, dad, Ads and I went for a morning walk at Emmarentia Dam (Johannesburg Botanical Gardens) last week Friday. I didn't even get out of breath doing the uphill back to the car! It's been years since I've been able to walk in those gardens properly. Adriaan LOVED the ducks! By the end of it all he was passed out!







On Sunday we went to the Walter Sisulu Botanical Gardens. It was VERY hot but luckily there is a lot of shade. I haven't been there since my 30th birthday picnic that was held there 3.5 years ago. Again, the walking was a breeze!





On Monday it was time for a routine biopsy. Still waiting for the results. It went fine, just a very tiring day. I included a pic of a very bad quality x-ray taken while while I was waking up (you can see I couldn't keep my chin up). Will take a pic of a better quality x-ray when I go for a check-up again!


Friday, January 5, 2018

2018!!!!


I've been wanting to do this post earlier this week, but I've been out and about enjoying the new lungs!!! HAPPY NEW YEAR!!! May 2018 be everything you want it to be. We had a very nice New Years Eve. Had a braai at Brendan and Marius' house. It was all very civil and we were in bed by 2am :-) We slept over there because it's just less stressful. It was great to be with some of the friends who most supported me in 2017 (unfortunately all my other close friends live far away) - not counting the LLGL girls of course. 




On the 30th of Dec we had quite an epic storm here in Joburg. We had quite a lot of hail and rain. After the storm cleared Chris and I drove up to Northcliff Hill (we stay at the bottom of the Hill) to look at the sunset. There were some spectacular views! Though I'd post a few pics here... I loved that the skies ended 2017 so dramatically.






My only resolution for 2017 was literally "to survive it". Happy to say that it worked out! In fact, I had a check-up yesterday, and lung function was GREAT, what the Dr terms a "significant increase"... my previous check-up also showed a "significant increase" so lungs couldn't be doing any better if they tried!!  X-ray beautiful (these lungs look a bit longer than the previous ones, which is pretty cool to see. Maybe that's why it feels like the breaths go sooooo deep :-) :-) :-) Bloods were better than last time, Dr not too worried about anything. Having a biopsy done on Monday (my "month 2 biopsy" in my Dr's preliminary biopsy schedule). Hopefully it goes well!

If I didn't get new lungs, I would have still been alive, albeit in a much worse condition that I am now. However for 2018 there will be some resolutions again! Here goes...

  • Take part in the National Transplant Games in PE in July (and hopefully go on to qualify for the 2019 WTG).
  • Travel as much as I can, including at least one overseas trip.
  • Take my fitness above where it was at it's peak after my previous transplant. The years of rejection has made me value the capabilities of these lungs and what my body can do (given enough lung-power and training), even more.
  • Figure our working/ LLGL/ my life and priorities.





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

RUNNING

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.