Conundrum of surviving

A neglected “by-product” of beating the odds after two bi-lateral lung transplants, is how hard it is to plan for your life financially and career-wise. I couldn’t finish my Honours in Accounting, as I was ridiculously sick. After my I got new lungs, I didn’t feel like going back to university, I wanted to work and become independent. When I started working at age 24 after my first lung transplant, I THOUGHT that I was financially behind my peers who started working slightly earlier, but looking back that was a joke… I was perfectly on par really.

However fast forward 7 years and about 3 months, and I was medically boarded, due to my transplanted lungs being rejected by my body. And for about 3 years prior to being medically boarded, I knew that I was in rejection and that I should stay put. Survival mode kicks in, ambition mode turns off. To paint the picture more clearly, at age 28 I knew that my life was in danger yet again, and that I just needed to stay in the position I was in for as long as my lungs held out.

I coped in a fast-paced environment for another 3 years, until I made the call, together with my lung specialist, that I should stop working. I was very lucky to have group life insurance at that point, so I continued getting 75% of my salary – tax free. At the same time the evaluation for a second lung transplant started. About 1 year and 9 months after being medically boarded I received another set of lungs… a miracle indeed! 

Now being an analytical person by nature, I was curious as to how long these lungs were going to last. My lung specialist refuses to give educated guesses on these types of questions, which is absolutely fine, but I wanted a vague idea. Dr Google said that the 2 year survival rate for a redo lung transplant is 32%. Obviously this is an average, but I decided to make the most of it. (FYI – I’m still the only surviving redo lung transplant recipient in SA). We travelled to New York and Mauritius during the first year after my second transplant, I fixed some things in and around the property that my ex-husband and I owned at the time, upgraded the little Peugeot 107 that I was driving… I didn’t want to go back to a corporate work environment, so I resigned once I was fit to return to work. This time around I took a much more slow-paced accounting job. Set for life…. If you’re going to live another two years that is.

Fast forward to beginning of 2022, and I was heading towards 5 years post redo transplant. I decided to study again, as I was lacking mental stimulation. I ended up picking a post graduate diploma in Financial Planning. A few months later I started a new job, more in line with my studies and a much more formal work environment again. But also in a way starting from scratch. The irony is that in my own life, applying financial planning skills is almost impossible. I think of where I would have been now, if that rejection of my first transplant didn’t happen. If all the retirement savings from those first two jobs kept on growing, if that salary kept on growing the way it would have. If I didn’t use savings for travelling. I’m not even going to bother wondering where I would be financially if my medical aid and the little co-payments here and there didn’t take a massive chunk of my salary. Also – there was divorce – but that is not a scenario unique to me.

The point that I want to get across, is that trying to figure out how to navigate saving/ having a career/ having a work-life balance when you have had two organ transplants (and especially lung transplants, because they have the worst outcomes of all the organs) at ages 23 and 33, is HARD. You can’t assume you’re going to live to age 65 when your first transplant was at 23! And hey, YOUR life is super short right? Live every day to the fullest! BUT you might end up living for a really long time and have to be able to support yourself and have a meaningful career, so there is that too. Nobody prepares you or warns you about this interesting tightrope, and you can’t expect that from anyone either, as each patient’s situation is so unique. But this is definitely an interesting challenge! One that I'm grateful to be facing.

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 :-(

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...

TIRED

I have reached a new level of tired this last month. I'm EXHAUSTED. Today my Fitbit is registering an all time high for resting heart rate... 98 beats per minute. On 4.5 liters of O2. And that drains you. When I'm making coffee or having a conversation my heart rate is 120. When I'm walking at a normal-ish pace with my O2 on 5 litres it's around 150. Right now blogging is pushing it to 109 bpm (and I haven't moved for about 20 mins). I have also stopped drinking coffee now as it's not worth the elevated heart rate that follows.

I don't feel like doing stuff anymore because the thought of it makes me tired. So my enthusiasm level for almost anything is zero. When I drop something on the floor it's easier to pick it up with my toes than to bend down. There are a few little "energy saving" tricks like these. Sometimes I go two days without a bath or shower because I'd rather spend the energy on something else. I've only been washing my hair about once a week. Priorities. And lack of energy.

I saw my Dr yesterday. Had bloods done the previous day. sometimes a high heart rate indicates infection, but my CRP is 10. (less than 5 is normal, but 10 isn't bad). All bloods are fine. Sputum hasn't shown anything yet, even though the stuff I cough up is very gross. He scanned my heart and it's normal, just beating very fast. blood pressure also high. So he changed my blood pressure medication to a new one, which will hopefully reduce my heart rate as well. I've been on a blood pressure pill since transplant, as one of the side effects of one of the anti-rejection medications is high BP. So let's hope the new one helps... if not, I will try both together.

Being this tired however doesn't mean I can just chill on the couch the whole day. I need to use my muscles, I need to stay as active as possible. I drag myself through various chores and activities (read - buy food and put petrol in my car, or visit someone, or go to the pharmacy) and live for that moment where I can actually relax in front of the TV. My beautiful nephew Adriaan is medicine for the soul... he makes me forget all this crap and makes me smile. Keeping busy with Love Life; Gift Life keeps my mind busy and inspires me. Keeping "busy" in general makes the days go by quicker. And every day that's over is one day closer to a new beginning.

I know you shouldn't wish your life away but I'm tired of this chapter. I never thought it would carry on this long. I want the next chapter to start so badly I cannot even put it in words. I want to have energy and enthusiasm for life again. I don't want to feel this anxious anymore. I want to be able to breathe again.

Second Sunday in Hospital

Day 12 in hospital! Nearing the end of my stay I think. Lungs aren't feeling as good as I hoped they would feel after 12 days of IV antibiotics to be honest. Pseudomonas was cultured in my sputum as I suspected, and not sensitive to many antibiotics at all... Lungs are possibly also struggling from the inflammation as a result of the Rhinovirus. So maybe they will bounce back later... I can only hope. Below is a pic of my PICC line.... as requested by some people. It's my best friend at the moment :-p

Right now my only aim is to get mucus out... it is soooooo sticky!!!!! Using Pulmozyme for the last 2 days (Inhaled medication that I haven't used in literally almost 10 years that breaks down mucus and makes it much more watery. I used it often with the old lungs). Walking also helps... as well as lying on my left side. Nothing more frustrating than hearing an orchestra in your chest and nothing comes up when you cough!!!! My infection count has also kinda just been up and down... Meeehhhhh. On the plus side my kidneys are fantastic. I love them.... thank you kidneys for putting up with 33 years of crazy meds. You rock. As do all my other organs minus the pancreas... sorry pancreas, but at least your function can be replaced by enzymes and insulin.

Had another lungaversary this week too, woohoo!! And of course the highlight of my weekend was seeing little Adriaan!!!!! I just want to cuddle him to pieces!!!! The little dude has totally stolen our hearts! Totally the highlight of the year! Not much else to report on. Enjoy the last few days of August!

In hospital

My cold didn't blow over, it just suddenly flew into my lungs. I started being feverish on Monday evening, which carried on throughout the night. On Tuesday morning it felt like my lungs were DROWNING in very gross mucus. It felt like I had instantly lost 10% lung function. It was the first time with these lungs that I needed a wheelchair to get around the hospital. I couldn't cope with walking, even with my portable O2 on max. Luckily I was able to see my Dr pretty quickly and got  admitted, had bloods, x-rays done and PICC line placed for IV's. My veins have been through too much in the last 33 years to cope well with normal peripheral IV access. A PICC line is a long line that gets pushed up from just above my elbow all the way around my shoulder towards my heart. It's an absolute blessing... makes a hospital stay much less dramatic and requiring less needle stabbings (and blown veins)... plus I have more movement available in my hand/arm.

So far the only test results of interest show that I have Rhinovirus (basically a common cold), and had a high infection count (CRP). The latter has come down a lot now at least. I'm currently on antibiotics and a higher than normal dose of steroids, although luckily that is already being decreased. Still waiting for the results of the sputum tests. Feeling loads better already. I managed to walk to the coffee shop twice yesterday (with Chris carrying my portable O2), and lungs starting to feel more open. You know you're feeling better when you are requesting earrings from home at least! (The below wasn't a bad selfie, I was checking out my ears)!

Had some great visitors yesterday... Chris was here the whole day, bringing with him a Latte and my favourite Almond croissant from The Argentinean. Then Andrew popped in with some AMAZING hot chocolate. Chrislie, my mom and Adriaan also came to visit! Haven't seen the little man in almost 2 weeks! I was feeling so sick on Sunday that I didn't want to risk making him sick. He is such a little heart thief! I was also joined for lunch/coffee by Brendan, Marius, Trevor and Ryan later in the afternoon. Even got some flowers! So everyone has really helped to make my Saturday fly past by keeping me busy! I've got some great friends and even more amazing family. Have a great Sunday!

Andrew's birthday, Jo-Mari's visit, prepping for Aug and small update on the lungs

I've been so "busy"! It's great :-) By busy I mean I did one activity per day. It's all relative. Two weeks ago we celebrated Andrew's birthday with a bang! I had lunch with him on the day, and on the Friday night we went to Beefcakes in Illovo. It was such a blast, I've never had as much fun sitting down and watching a show! Had to turn my portable O2 up all the way to 5 litres!!! (Normally on 3 or 4 litres). I was useless the following day, but it was well worth it.

I received the most amazing "Open me when" package from my cousin Mia in Jeffreys Bay! It's such an awesome concept from Rare Diseases! It's a bunch of parcels with instructions like "Open me when you're scared", "Open me when you're hungry", "Open me when you're in hospital" etc. It's amazing, so far I've only opened two, so still a few to look forward to!

My university friend Jo-Mari who works in Quatar was here last weekend, so got to catch up with her as well. She had a stop-over in Joburg on her way down to PE. Such a treat.

My sis has gone back to work, so seeing much less of my cutie-pie nephew :-( Will be seeing him this weekend at least! It's my sister's 30th birthday tomorrow!!! The two of us will be going to a spa tomorrow afternoon for some pampering... wish I could make full use of the spa facilities... ie the pool, but will be freaking awesome anyway. Unfortunately I broke my stupid nail off yesterday when I picked up my laptop, so good luck to whoever has to do my nails!

I also met another lung-friend in real life this week... Martie! She has Pulmonary Hypertension. Was great finally getting to chat properly, although it wasn't for long. We will def be doing it again.

So this post is basically my life in pictures it seems... sorry! Don't really have anything substantial to say. I had a lung check-up a week ago. The only thing that has changed is that my 6 minute walk test results were crappier. I could walk the same distance (a little further than last time in fact), but my oxygen sats on 5 litres of portable O2 dropped to 77%, VS 85% in April. Saturday was exactly 9.5 years post transplant for me. Ten year lungaversary getting closer and closer...

August is going to be super busy, it's organ donation awareness month! (as well as my birthday month!!) Love Life; Gift Life has soooo much planned in terms of raising awareness in Johannesburg hospitals in collaboration with various transplant coordinators. It's going to be a good month.