Turning 40, moving Isle of Man and 7 Year Lungaversary of the 2nd set of lungs

I started this post about 2 months ago, just before I turned 40, but I was overwhelmed by how much there was to update that I gave up. So let me try again, this time for my 7 year lungaversary, WHICH IS TOMORROW!

Arno flew over to the Isle of Man on the 27th of July, and I followed on the 12th of Aug. It was a long journey, with 4 overweight bags, and very heavy/bulky hand luggage! Saying goodbye was obviously hard, but the new adventure awaiting was exciting. Especially after all the months of (what felt like) blood, sweat and tears to get the visas. 

We are renting a cute cottage in Ballabeg (although the car has already changed from that pic!), in the south of the island. I managed to get a job 7 minutes away from home, which is a massive change from my Pretoria-JHB commute. I started working on 1 Oct, it's been a month full of learning and getting back into a routine. Getting a job was stressful, as I applied for various positions at the same time, and you end up juggling interviews and try to hold off on making decisions while waiting for other companies to respond etc. But all in all I'm fortunate to only have been unemployed for 2 months in total, which was perfect for saying good byes on the SA side and settling in on IOM. I spent a week with my parents at their holiday flat in De Kelders, which was very special - apart from the fact that I had a cold.

We are STILL waiting for our cube with some furniture, clothes, crockery, books etc to arrive... it was delayed at the port in Durban, and now it's sitting in Liverpool, waiting to be brought over by a local removals company. 

The kitties arrived 2 days after me, they travelled for like 5 days. First 2 days in Joburg for private and state vet checks, then Frankfurt, Londen, Liverpool, IOM. My baby, Tay, has not totally adapted, he tends to stay upstairs, he is scared of going downstairs (we think it's the sound of cars driving past - we're on a main road). He is also scared of the wind when it blows. I'm hoping he gets a bit better, and hopefully the next place we live in is not as close to a relatively busy road.

The biggest challenge so far for me has been getting all my medical stuff sorted. I have an appointment with the Liverpool CF Team on 6 Nov, and waiting to get an exact date from Wythenshawe Lung Transplant unit in Manchester, but I'm "pencilled in" on the 8th. It seems like I'm the only lung transplant recipient on the island so it's been a bit of a back and forth to get me referred to the right centres. Manx Care (the local version/branch of the NHS) pays for the transport to these appointments, which is pretty awesome. I received airplane tickets in the post for the Liverpool appointment, and expecting the same soon for Manchester.

We celebrated my 40th with a boat trip to the Calf, a little island below the mainland (the mainland is the Isle of Man, NOT the UK. The UK is "across"). It was lovely! Can't even believe Im 40, that's a whole different mind boggle!

We've also had our first visitor, Carli! One of my oldest friends (not in age - we differ exactly 2 weeks!), who lives in London. It was great showing our home to someone special to us. Next up is Annelie and Bernie for Christmas! Will be nice to share Christmas with family.

Ending off with my LUNGAVERSARY tomorrow! It feels like so much longer than 7 years, considering everything that has happened in those 7 years. Travels to New York, Mauritius twice, UK twice, Norway & Sweden, got divorced, lived on my own, lived in a garden cottage by my sister, dated, moved in with Arno, got a proper job again after being disabled as a result of the rejection I had, became an aunt again, survived a pandemic... just so much LIFE in these 7 years! Tonight 7 years ago a family lost their wife/mother/daughter :-( Words are not enough to say how grateful I am, it just seems lame. But I hope she looks down on me and smiles. Alongside donor nr 1.

Oh and by the way, I saw Aurora!!!! 

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!

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!

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!