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!

Long Overdue Update

Not even 4 months since my last update, and so much to report on. I don't really blog anymore, but don't want anyone to think I've died, so I'm trying to leave proof of life here every few months. 

Mauritius was heavenly. I miss it! We had the best time... snorkelling, drinking rum cocktails, EATING local food, driving around the island. Some pics below...

We got back just in time for the Omnicron variant... perfect timing! My sister, brother in law, niece and nephew all got this Covid variant, but luckily they were all OK. The baby was first to be diagnosed! Thank goodness I hadn't seen them much in that window of time, so I didn't get it. One of my very close lung transplant friends Talia wasn't as lucky though, and has been fighting for her life on ECMO and a vent for about 6 weeks now :-( Heart-breaking. She has triplets who are almost 18 months old at home... as well as a husband. I want her to survive this soooo badly. So many people that I know are not doing OK at the moment.

In much better news, I met the most amazing guy as soon as I came back from Mauritius. His name is Arno. He's 34, also from PE, and all round brilliant. I'll be moving in with him on the 19th of March. Which means moving to Pretoria! I'm not a stranger to Pretoria at least, my grandparents lived there (in the same neighbourhood as Arno actually). Very excited, but I'll still be coming to JHB a lot for family, work, and my many Doctors. I feel like I've won the Lotto with this one!

We spent Christmas in PE, with Arno's parents, and I did my first bit of camping EVER! It was very cool, even though we got soaked in our tent, Definitely an adventure!

Lungs are doing fine on the new meds, lung function was up 2% last time - 94% FEV1. Not bad!!! Gynae will be doing a biopsy again later this week, dermatologist has been burning tiny warts as per usual, had a tooth break. Not much news. Very very thankful to have avoided Covid thus far. Literally all my "normal" friends have had it now. And half my family. Very grateful for the vaccines I've had (as well as all my friends. None of them who got covid post vaccine were very sick. )

I'm also doing a post graduate diploma this year and next. In Financial Planning. Nervous and excited to be studying again. 

I'm hoping to go to my 20 year High School Reunion in April, if time and finances allow. 

I realised the other day that when I was this far out from my first transplant - 4 years 4 months - I had my first bout of rejection. I've had no rejection with these lungs yet, so hopefully that's a good sign. Life is good... I'm thankful every day.

4 years since the second transplant!

The 31st of October marked 4 years with my second set of gifted lungs!!!! Time has flown SO MUCH! It's unreal. I thought it's time to update the blog a bit. 

So health wise everything is good! So far I've still had NO ISSUES with these second lungs. They are beautiful and I love them. I had an outstanding check-up last week. My blood results were all normal, and my kidneys are doing better than they have in years. Not that my kidneys are bad, but 14 years of immunosuppression does take it's toll. 

Something that's big for me though... as that as of yesterday, all my immune suppression has been changed... the reason for this is my history with the hysterectomy and abnormal cervical/vaginal cells. So one specific medication, Everolimus or Certican, has the "side-effect" of being very good from a cancer perspective. As well as suppressing your immune system for transplant purposes. So my dose of Certican has been pushed right up, and my Cellcept has come down from 1250mg twice a day, to 500mg twice a day. Neural has halved, from 50mg twice a day to 25mg only. Prednisone stays at 7.5mg. These massive changes make me very nervous! However I've had big changes in the past and my lungs were fine. So I just have to trust that they will be fine now too.

I didn't go big with celebrating this year's lungaversary, but next year will have to be an epic one... 5 years is a milestone! 

In very exciting news... On Sunday I'm off to Mauritius with a friend from school! Carli! We booked the tickets in August already, hoping the Covid won't spoil our plans, and it seems like things have worked out for us! Soooooo excited. We're not staying in a resort, will be doing our own thing. Will post pictures!

Good results!

 Just feedback on last week's many procedures and biopsies, because so many people wished me well!

Colonoscopy and Anoscopy was 100% normal. Zero issues there, I can repeat in 4 years. Whoop whoop.

Tongue thing was a fungal/candida issue. Possibly due to years and years and years of antibiotics. Hopefully I can prevent it from happening again by using the only anti-fungal mouth medication that I'm allowed. Apparently all the others interfere with my meds. Might have to use it every day forever. That's fine if I'm can eat all food again without pain. Luckily it wasn't anything serious. Still have 4 stitches in my tongue that should fall out soon, but at least it's not painful anymore and I can eat more than just soup now. 

Vaginoscopy results were also good. The abnormal cells I had left after the hysterectomy are less, and less severe. Only a "mild" abnormality left. I will continue current treatment for another 4 months. Thank goodness! I was stressing about this one the most!

So a "clean" bill of health basically. As clean is it's going to get. I was SUPER impressed with Donald Gordon Medical Centre's care. Everything was on time. The covid protocols were great. I wore both my masks the entire time I was awake. When I woke up in recovery both masks were back on. (it was also pretty cool to wake up in recovery with no oxygen and 2 masks on, with O2 sats of 100%. ) Take that people who complain they can't breathe while wearing a mask! All 3 surgeons and the anesthetist were also absolutely amazing. I did struggle to keep my blood sugar up with having not eaten for 24 hours before surgery, but eventually I was taken to theatre just in time for a glucose drip. Which was a nightmare to get in, because CF veins, but all worked out fine. 

Third Wave, Pandemic Anxiety, Surgeries on Tuesday.

 So Pandemic shit got real these past few weeks. Especially here in Gauteng. It feels like EVERYONE is just getting sick. Everyday more people that I know have Covid. This past week three SATSA members (Transplant Sport) passed away. Two were transplant recipients and one was the husband of a heart transplant recipient. It's bizarre.... how people are desperately asking me if I know where you can get oxygen on the "black market" (no I don't), and asking me all sorts of lung related questions, because I'm an expert in that area. Also - suddenly everyone knows what a pulse oximeter is. WTF... how times have changed. I bought mine on Amazon in California in 2015, because they were much more affordable than the ones available for sale here in SA. Now every second person has one. Hearing people with Covid talking about their O2 sats has made me test mine again! At least all is still good in that area... tested it yesterday while cleaning my flat. 

I've been self isolating since Tuesday... because I'm having a whole bunch of scopes and biopsies done this coming Tuesday. They are as follows:

Colonoscopy and Anoscopy - because I'm over 30 and have CF and have been on immune suppressants for almost 14 years. So that ups my risk for colon cancer. Joy... 

Tongue examination under anesthetic and biopsy - because I have a funny spot on my tongue, that has really confused my lung specialist as well as a head and neck surgeon... they both have no idea what it is, so they want to check it out while I'm out, and then probably cut the whole thing out and send for biopsy. 

Vaginoscopy - with my hysterectomy last year in November, they didn't get clear margins when they cut out my cervix. So there was still some medium grade abnormal cells left. They've been treated, so it's time to see if it worked.... very very nervous for this one. 

As you can see, Tuesday and Monday will not be fun. I just want to get it over with. Every orifice will be examined by 3 surgeons... kudo's to them for organising it so well though. I much prefer one insane day like that than 3 admissions, especially in a pandemic. I had my 13th Covid swab done today, and luckily it was negative as expected. All of this will take place at Donald Gordon medical centre. 

PLEASE NOTE: these types of procedures are all part of being a transplant recipient, especially as time passes after your transplant. There is a lot of stuff that need to be checked out ALL THE TIME. It doesn't mean I'm not doing well, or that I'm sick (I'm really in better shape than ever), it's just managing the side effects of taking 4 immuno-suppressants. And 30 years of cortisone use. All the things that have kept me alive. Fingers crossed that all the results are good!

Blogging on the Backburner

As you may have noticed, I hardly ever blog anymore. Life's pretty busy, but I do post on Instagram and Facebook a fair bit! So if you'd like to keep up with my journey with these second set of transplanted lungs on a more regular basis, follow me on either one of those 2 platforms. If there is big news, I'll share it here!

Also, today marks 3 years and 5 months with the new new lungs, yay!