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.