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!

Tuesday, October 10, 2017

The downward slope towards the end of the year

October is already a third of the way through!! When did that happen??? It's all downhill to Christmas now I guess. At the beginning of the year I was so confident that I would be healthy enough to go away to Storms River for Christmas this year that I almost insisted we make a booking, as that place is so popular! Luckily we didn't...

We've had 2 fun evenings out at least. The first was to The Local Grill for Chris' birthday. We went with Chrislie and Pierre for some AMAZING steak. Afterwards we went to Paul's ice-cream in Hyde Park. On Chris' actual birthday we wanted to go to the movies, and we call ahead to ask if they have a plug/power point in the cinema where we could plug in my oxygen (where else do they plug in the vacuum cleaners???) but they insisted that they don't. Unfortunately the movie was only showing at Rosebank, otherwise we would have tried other places too. They said that they only have wheelchair access. They don't cater for people needing to charge. So in summary I'm too short of breath to watch a movie now. F@&king annoying...

The other fun night we had was at Andrew's house on Friday evening. He made some curry and we had an awesome evening!

Apart from that things have been quiet. Oh I've been featured on this website called "Power 2 Save" - an initiative developed by the American Society of Transplantation (AST)! They aim to increase public awareness around the importance of funding transplant research, donating organs and advocating for transplant health. So that's quite cool.

Adriaan also had his first school concert!!! It was freaking adorable. He was a sailor. He is in the Teddy Bear class and was the youngest baby there. He was super well behaved and totally chill in the limelight :-)

Friday, September 29, 2017

New pill progress and RIP Emma kitty

Firstly, Friday was 9 years 8 months with the borrowed breathers. Go lungs go! Every month I wonder if this is the last month that I'm celebrating the lungaversary with these lungs. However they continue to carry me and I'm so grateful for that. 

Since starting the new blood pressure medication my heart rate has dropped tremendously. My Fitbit's strap broke, so I haven't worn it since Sunday or so, but in the first week of being on Concor my heart rate has dropped 20 beats per minute! And it has dropped even more since then. So that has made me feel a lot better. I'm still very out of breath when moving around but at least my heart feels less like it's busy exploding. And that's always a good thing. It's kind of scary what a tiny little pill can do... I have slightly more energy too I think, although I hope I didn't just jinx it by saying that. My last sputum sample that I did 2 weeks ago showed Pseudomonas again, but since my infection count was really low we're just carrying on with the antibiotic nebs.

My parents have had to put my old cat Emma down just after my last blog post... :-( I got Emma in April 1999. She was a very difficult cat, who bullied all the cats who came after her... so much so that for a period of 9 months we had to let her stay with the breeder again until the new kitten we got grew up. She loved my sis much more than she loved me, although if there was no one else for her to sit on she would sit with me. The below pic was taken in December last year. Ten years ago when I was waiting for my transplant I never thought that I would out-live Emma. She had become blind and her kidneys were failing unfortunately. She has also (ironically) never been the same after the other cat Lily (who she almost killed) died about 2 years ago. RIP Emma kitty.

Not much else has been happening. Time seems like a bit of a blur. I'm a little bit in shock by the fact that it's almost October. Adriaan has been adorable as per usual. The kitties keep us amused.

Oh almost forgot, I went to see Jessica at her photopheresis session yesterday in Pretoria. Also wanted to say hi to the "vein whisperer" Cecelia who made my 24 treatments so much more bearable. I'm their longest surviving photopheresis patient so far it seems (I think I was the second lung transplant patient who had this... not sure... but def one of the first here in SA.)! Very strange to think that! The treatment never improved my lung function or kept it stable immediately, but it did slow down the decline of my lung function significantly. So it was successful! Can't believe it's been more than 4 years since I started the treatment back in 2013. It's been a crazy few years...