6 Years and going strong!!!!

I've been meaning to do a post again, but keep forgetting! Then yesterday anon's comment reminded me that a post is LONG overdue! I cannot believe my last post was 1 May... shocking!

So the biggest milestone was my 6 year Lungaversary almost 2 weeks ago on 31 Oct! It's a biggish one for me, because when my previous lungs got to 6 years I had been diagnosed with chronic rejection. However this time around all is still well! Thank goodness! I didn't celebrate as much as I would have liked to, due to studying! (more about that later). But I will make up for the lack of celebration in December! (more about that later too). I had a medical check up just before the lungaversary, and it went GREAT. My kidneys took a bit of a mystery dip in June, but they have recovered luckily. Lung function great, all other bloods fine, next app next year! I actually don't have any other medical check ups this year, but I think I'll have to see a dentist somewhere this month for a tooth that might need a crown.

Studies: So at end of Aug and beginning of Sept I wrote my last two outstanding subjects for my Postgraduate Diploma in Financial Planning. Unfortunately I didn;t get the required 60% for the Case Study subject, so I had to re-write that one this past Monday. It's an 8 hour exam, super exhausting, but this second time went a million times better. It helps to know what to expect! Thank goodness the exams are over now! Now I can breathe a bit (no pun intended) and prepare for the end of the year's trip!

So in 1 month and 1 day's time, Arno and I leave for our xmas holiday in the UK! We booked tickets in June already, so it's been a wait, but very excited! We'll be staying in a friend Carli's flat in London for a week and a bit, then off to my aunt in Yorkshire for a few days over Christmas, and then down to Bristol to visit another friend Bonnie. Flying back on 31 Dec, entering the New Year on a high note! Can't wait, this will be my 5th time in the UK, but Arno's first time, so will be so nice to experience it through his eyes again! Also super keen for the proper Xmas vibes, it's not quite the same here where Christmas equals heat and summer! The odds of a white Christmas is probably not high unfortunately, but we can hope!

In June we had a short break to Stilbaai (directly translated means Quiet Bay), for a mini university reunion! It's been 20 years of friendship with a core group of friends from varsity, and we finally got to all meet up at the same time (partners and kids included where applicable), at the amazing holiday house of Terrance's family. Even though it was winter, the sun was shining, the air fresh, and the company AMAZING, so good for the soul!

We also had a great family long-weekend at the end of Sept on a Game Farm. The photo's speak for themselves!

The year hasn't been all holidays and fun though. Arno and I really tried to move to Joburg, so that I can be closer to work, my doctors and family (we stay in Pretoria, the city next to Johannesburg, so I drive 50km between work and home, so 100km per day going to work in terrible traffic.) We put in an offer on a townhouse that we loved in the same suburb as my parents, the offer was accepted, but then the body corporate would only allow one cat, and we have three... When when found a house we loved, put in an offer along with like 4 other people, and our was accepted. Arno's place was "sold", but then his sale fell through... and we couldn't find other buyers, so we lost the house. Was such a bummer. At least now I work from home 2 days a week, so that helps a LOT. Then interest rates rose etc etc so we didn't even try to sell his place again. For now we're just staying put and seeing what happens. Hopefully next year will be more exciting on that front. Fingers crossed. 

That's everything in a nutshell! I promise I will report back on our Dec adventure in Jan before work starts again on 3 Jan!

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.

5 Years Since the second transplant and general life update!

Someone asked for an update here, and I promised I'd give proof of life every few months for those not Instagram or Facebook. 

HEALTH:

Medically, the biggest milestone is that I've reached 5 years post second transplant! That's quite a big deal! 5 Years is the most often used milestone used when measuring lung transplant success. As you can see below, Google doesn't paint a good picture when it comes to 5 year lung transplant survival rates:

Had a small celebration last weekend at Black Horse Brewery. However on Monday, a week ago, I started having severe pains on the right hand side of my abdomen. Going all the way up around to my right kidney more or less. I went from work to casualty, waited there for an excruciating 3 hours. Eventually they found what looked like 2 cysts on my right ovary. (You might remember I had a hysterectomy 2 years ago due to pre-cancerous cervical cells, but my ovaries were kept to avoid menopause). I was admitted, seen by my lung specialist, who said my blood tests are all normal, and that he would call my gynae. Her response was that ovarian cysts usually aren't a big deal, he can discharge me with pain meds, but that I should stop by and see her on the way home. 

So on Wednesday morning I was discharged at Milpark, and went to see my amazing gynae at WITS Donald Gordon Medical Centre. Her ultra-sound showed a cyst of about 12cm that was bleeding... by this time I'd also started having a temperature, and my white cell count had gone up from the Monday. Not good. She said the ovary was also twisted, and she had to operate asap. So I was booked into ICU at Donald Gordon, with surgery set for 19:00. I was in so much pain i would have volunteered for surgery without anaesthesia at this point. After waiting the whole day I was taken to theatre, given a spinal block (to help with pain when waking up) and general anaesthesia. I woke up just over 2 hours later, luckily with no pain at that point. My gynae showed my some amazingly gross pics of the cyst. It was black and looked something like a kidney. The twisted ovary was also completely dead. My left ovary looked fine so she left that in. To avoid menopause again. 

I was discharged on Friday morning, the post op pain only really started on Friday thanks to the pain management in hospital. It's been fairly rough, but this morning it feels a lot better. This is much worse than my hysterectomy, which was laparoscopic. The cyst was too big to remove laparoscopically unfortunately. I'm not allowed to drive for a month, but will start working from home soon. Can my female reproductive organs, or what's left of them, please stop giving me grief now??? I'm sorry I never used you for babies. Now leave me alone.

I've also started using the Dexcom G6 to manage my blood glucose, it's been LIFE CHANGING. My sugar levels have never been this good and I'm super chuffed. I've never really cared much about my diabetes... I've joked with a few CF friends before saying "diabetes is the least of our worries", or "look... CF will kill us way before diabetes does any damage"... but again, I seem to be not dying, and I can't end up with kidney failure or other diabetes complications down the road. So if I'm going to be here for a while still I need to look after all the organs. (Not that I didn't.... but you know what I mean.)

WORK:

I started a new job in May, my first full time job after this transplant. To be honest I didn't expect working a full time office job again, as I didn't expect living this long after the second transplant! Keeping this body going is an expensive task unfortunately! I also started my post-graduate diploma in Financial Planning, which I'll be doing over 2 years. I've passed this year's subjects at least! So that's on track. It's been awesome studying again 16 years after finishing my degree. I didn't know my brain could do this! 

TRAVEL:

Arno and I were very fortunate to visit Norway and Sweden in July this year. We stayed with friends in Oslo, and did our own little trips from there. It was truly amazing. We saw Stockholm, Kristiansand, Stavanger and Oslo. This past week's unexpected health drama just makes me realise how special trips like these are, and that healthy times need to be celebrated.

LIFE IN GENERAL:

We're planning on going down to Arno's parents in PE again for December, CAN NOT WAIT. I need some beach and sea and fresh air! We will also be spending two nights at ADDO Elephant Park with his parents down there. We'll have Christmas Supper with my family on the 16th of December. We'll also pop in to see my gran in Jansenville on the way down to PE on the 17th of Dec.

We're still living in Pretoria, and work and family is in Johannesburg, so I'm commuting a lot. Need to find some solutions there next year, it's very taxing. My niece and nephew are cuter than ever. Eloise is saying my name and starting to speak, she also has a very definite little personality! The below pic was taken after Adriaan's school concert recently.

I'm struggling with getting enough time to exercise, so that's something I need to work on, and last week's emergency surgery is not going to help with my fitness, so that's really annoying. But there's not much I can do about that now! 

Let me know if you'd like me to blog more often! Then I'll make an effort!