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.

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. 

17 December

The 17th of December has been a memorable day for the past 3 years! In 2017 I ran on the treadmill for the first time after my second bi-lateral lung transplant. In 2018 I tore my Achilles tendon for the second time, and last year I arrived in London on this day. Nothing much to report for 2020 though. 

Yesterday Brendan, Marius, Andrew and I had a little Christmas lunch before they go home to PE etc. It really was very nice. These have basically been the only people I've socialised with the entire year. So grateful for these three!

The main excitement in the family is the fact that my sister's baby girl is arriving in Jan! We can't wait! The whole family will just be here for Christmas. Looking forward to just seeing the end of this year.

I see that I never posted anything about the picnic I had for my 3 year lungaversary... It was an AWESOME celebration. I've been trying to have a picnic every year since the redo transplant, and every year it has rained. However it was third time lucky this year. (Strange, saying 2020 and lucky in the same sentence!). The weather was great, and got to see my favourite people!

My check up 10 days after the hysterectomy went fine. The surgeon said she would have let me go home the same day still, but the other Drs were a bit weary of that. Cuts have healed well, and last night/this morning a lot of the dissolvable stitches fell out. Seeing her again on 13 Jan.

Also had a lung checkup on 1 Dec. Lung function was down a bit, probably due to the anesthesia. Kidneys are also taking some strain with the combination of meds I'm on to allow for healing after the hysterectomy. However I'm switching back to my usual meds next week Monday. Yay! May this be the last surgery in a while! So much admin! Will have another checkup on 22 Jan, which will be the 13 year anniversary of my first lung transplant! 

I probably won't blog again before Christmas, so MERRY CHRISTMAS!!! 

Hysterectomy - check

I had my Total Laparoscopic Hysterectomy 8 days ago. To be honest it's been the easiest surgery I've ever had. The build up to it (admin, biopsies, pap smears, bloods, uncertainty regarding whether I'll keep my ovaries) was much worse than the actual procedure. I spent 1 night in hospital post op, in ICU. Was home less than 24 hours after the surgery. And I DID get to keep my ovaries... they were deemed "pristine" and not worth removing, for which I am very glad. No early menopause!!!! Thank goodness. There's hardly been any pain, felt more like I overdid it with a lower ab workout. Medical advancements blow my mind!

The selfie was taken about an hour after I woke up. The oxygen was mandatory in ICU, although I did manage to subtly get rid of it after a few hours and no one said anything. Had to inject myself with Clexane for a week to prevent clotting, which I'm done with now. The next step is my check-up on Thursday with the surgeon. She'll remove the plasters and hopefully give me the all-clear to drive again. Then my life can basically go back to normal. Also need to find out what the rules are regarding exercise. Right now I'm only allowed to walk. It will probably be that way for a bit. At least once I can drive again, I can also go and walk at the gym, for some variation and more Vitality points.

I spent last week at my parents' house. Working a bit, taking naps, watching The Crown and building a puzzle. On Saturday morning my dad was kind enough to drive me to breakfast with Robyn. She's a long time friend who had her kidney transplant just a month after I had my first lung transplant. We were roommates at our first World Transplant Games in 2009 in Australia. She lives in East London, so was great to be able to catch up with her again.

I'm very happy to be back at my own place now since Sat afternoon. Tay-Tay (the kitty who chose me) is very glad that I'm back. Counting the days till this rather crappy month and year is over (it could have been much worse, and I was healthy, so trying not to complain too much). I have one lung check-up left as well, on the 1st of December. Really hoping that goes well and that I can end the year off on a good note medically. 

3 Year Lungaversary, 2 Trips Away, 1 Hysterectomy pending

First things first, Saturday I celebrated 3 years with my new new lungs!!! I've done quite a bit of googling about the survival stats for redo lung transplants, and the average seems about 3 years. Needless to say it's not GREAT, and reaching 3 years without any rejection so far is amazing. Feeling super blessed and lucky, and I appreciate the easy breathing every day!

Then, I've finally been able to have two awesome mini-breaks in the past 6 weeks. At the end of Sept I went to Mabalingwe with some friends. We had an amazing long-weekend in the bush. The weather was good, we got some good doses of covid-fighting Vit D. Thank you summer! It was SO GOOD for the soul to be away with friends. Listening to music, eating too much, going on game drives, drinking gin and tonic, soaking up with sun. One of the highlights of the year. Especially after the cancer scare I had the week before.

The second break was a long-weekend to Umdloti in KZN. I badly needed to see the sea, it's been 2.5 years! We had the best time, especially the snorkelling! Just amazing. Wish we could have stayed longer.

Then lastly... I'm getting a hysterectomy on the 16th of this month. My cervix has been the bane of my existence since my first transplant. 13 Years of immunosuppressants come at a price. I've had problems with abnormal pre-cancerous cells since 2009. They have been burnt off and cut out in theatre and in the Dr's rooms many many times. But now there is literally almost no cervix left to be able to do that. And there are highly abnormal cells once again. So my uterus and cervix are coming out. We're hoping to keep the ovaries, and I've been having blood tests done to try and determine if we can leave them. I really really hope so. I do NOT particularly want to go into menopause.

My gynae has been amazing, and the op will be done laproscopically at my transplant hospital, where they don't normally do gynae procedures. Two Drs, all their equipment and a nurse will come for the op. My transplant anesthetist (and favourite vein whisperer) will be the anesthetist on the day. And my transplant surgeon and lung physician has also helped to arrange the theatre time and admin behind all of it. I feel SUPER special! And very relieved that it will be done with the team of people I know and who know ME inside and out! If all goes well I will spend one night in ICU and go home the next day. 

The Dr who will be performing the surgery laproscopically is not my usual gynae (she will also be there though), and I'm meeting her on Thursday. As of today I have also stopped my one immune suppressant, Certican/Everolimus, as it delays wound healing, and massively increased my dose of Cyclosporin/Neoral, to optimise healing afterwards. Next week I need to have blood tests done to make sure the adjusted doses are right. I guess I can't claim I'm low maintenance......

I'm very very relieved to have a date for this and that it's finally happening. It's been hanging over my head for years. At one point about 4 years ago a hysterectomy was also very much on the table, but my lungs were not in very good shape. There were talks of doing it with a spinal block while I'm awake. But my Dr was able to cauterize the abnormal cells off, and since then by some miracle it's been OK for a bit. However now my lungs are in tip top shape, so it's time.