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.

Tuesday, November 28, 2017

New Lungs, New Life... for a second time 💚

As most of you know I've been in chronic rejection of my bi-lateral lung transplant that I received in Jan 2008 since the beginning of 2013. I had a course of 24 sessions of Photopheresis in the period between Aug 2013 and May 2014. It was deemed successful as it drastically slowed down the decline of lung function that I was experiencing mid 2013. I was still able to take part in the National Transplant Games towards the end of 2014 in Stellenbosch (I couldn't play squash or do race walking anymore, but had some training in shot-put and discus. I was pretty bad at it, but I really wanted to compete!). At this stage they had never done a second bi-lateral transplant in SA before, but I hoped that they would consider me when the time came.

In October 2015 I as admitted to hospital with a Pseudomonas infection. I used to culture this bug with my old CF lungs, but never with the new lungs. However it loves diseased lungs and mine were now at the point where Pseudomonas deemed it a good time to return. After two weeks in hospital I went back to work. In January 2016 I was admitted to hospital again... not feeling well at all. A biopsy was done and unfortunately both lungs collapsed in Recovery. I was told that this was due to air trapping, which happens with the kind of rejection that I had. I woke up in ICU with 2 chest drains, and after a month in hospital I was able to return home, but I was now on oxygen 24/7. At this point I also stopped working. I was admitted another two times in 2016 with the same bug.

Towards the middle of 2016 I underwent the work-up process for transplant again. It was more comprehensive than the first time around. I had to keep my weight up even more and see a biokineticist twice a week, along with frequent Drs visits obviously (dentist, gynae, lung Dr, dermatologist, had scopes done...). I was placed on the waiting list again during the second half of last year. This year my lung function fluctuated between 24 and 30%. I was hospitalised again in August with a cold and returned home with another new bug :-(.

I was really starting to get depressed, as the work we do with Love Life; Gift Life has showed me how much is lacking with organ donation in this country, and how the number of transplants performed has declined since my first transplant. Somehow patients on the waiting list were being let down by some people who work in the field yet doesn't know what it feels like to hold your breath waiting for an organ, while seeing others on the waiting list pass away. I had to keep telling myself "If you hold out long enough, statistically there HAS to be lungs for you someday. By the way, please tell your family of your wishes to be an organ donor via our website! Your family are the ONLY people who have a say regarding what happens to your organs once you pass away, so if they don't know it means nothing.

A few weeks ago, shortly after midnight, my phone rang. It was my Dr!!! He said that they possibly had lungs for me!!!!! We had to be at the hosp by 3am. We calmly packed and got ready. I started trying to get hold of family members and close friends. I was extremely excited!!!! My mom and dad joined us at the hosp a little while later. The waiting part at the hosp was a bit of a blur... I tried reading, had to take a bath. Took a selfie. The time between the call and the transplant was a lot easier this time around! It was much shorter and we didn't have to fly from PE. I would definitely recommend to anyone on the waiting list to live close to your transplant centre! It takes off a lot of pressure! This also applies to post transplant.

They took me to theatre at about 8am. I wasn't nervous at all, just hoping and praying that the lungs will be good and that it won't be another dry-run (story for another day).

I came out of theatre at about 16h00. The surgery had gone really well, and I didn't need ECMO in ICU (only VA-ECMO in theatre). Read more about ECMO here. This is quite amazing, seeing as I'm a retransplant. With my first transplant I was ventilated for 4-5 days, so we expected the same at a minimum. However when Chris called the next morning I was sitting up, off the vent and talking!

I was so surprised when I woke up and heard that it's only the early hours of the next day! It motivated me to try and push myself to get out of ICU. My ICU experience this time around was much better though. Probably partly because I knew what to expect, and also because it's a new ICU which is much nicer than the old one! I did have some hallucinations of people talking and music playing, and I was quite confused a couple of times. Medically it couldn't really have gone any better though.

On day 8 I was moved to Section 7, which is a big step in the right direction. I still had 2 drains in... one of the big intercostal drains and a Euroset (which is actually also 2 drains). The intercostal ones are really thick and pretty sore. Thank goodness for pain meds!

The Euroset is placed in the soft tissue and not in the rib-cage itself, so they are much less painful.

It was a bit annoying though that the Euroset didn't want to stop draining and probably kept me in hospital for an extra 10 days! This is mostly a combination of a medication that I was on before this op that prevents healing (it was one of my anti-rejection pills), and the fact that it's a second transplant and they had to go through a lot of scar tissue. It gave me the opportunity to build up more strength in hospital though. The best part was getting rid of the supplemental oxygen after about day 10 post op, and walking around the hospital with no oxygen, drains still in but great O2 sats.

So I've been the first successful redo of a bi-lateral lung transplant in South Africa as far as I know. The last few years have been quite tough, so I'm really hoping that in the next few years Chris and I can live our lives a bit less stressed again, and that the easy breathing will continue. We would love to travel again. I want to take part in the World Transplant Games again. I also want to be able to do more for Love Life; Gift Life and help us transform organ donation in this country. Right now I'm still being monitored EXTREMELY CLOSELY, as all of this is a first and my Dr is being super vigilant. But at least all these dreams have a chance of becoming a reality now, thanks to my donor family. I have so much love for them that I can't actually put it into words (although I will try when I write them a Thank You letter). Thinking of them every day in their time of grief, especially with the holidays coming up :-(

Saturday, October 28, 2017

Catch Up!

So October is almost done! What's been happening? Quite a bit but also nothing at the same time. Adriaan was Christened last Sunday. The whole weekend basically revolved around that, with Pierre's family being here from PE. I got to carry him into the church, so that was really special for me.

It was also 9 years and 9 months with the lungs, whoo hoo. Had a good Dr's visit on Thursday. Lungs stable, weight great, infection count super low (CRP was 3!), all the other bloods good too. Had a gynae check-up as well since my last blog post, and all is great. (My medical history includes a lot of  not-great gynae check ups and procedures, so right now I need to see her every 4 months to make sure all is under control.) So it's all good news.

Joburg is really showing off right now with all the Jacaranda trees in bloom! I took these pics on Weds when I went for blood tests. The pictures don't even do it justice though, but it gives you an idea of how pretty it is. The weather has turned pretty freezing this weekend for some reason. I thought we were going to get a nice storm but it missed us completely, we just got the wind! We went to a very nice birthday party last night, and tonight we're just chilling with Chrislie, Pierre and Adriaan. So in summary, things are pretty good right now. The aim is to keep it this way!