Monday, November 7, 2022

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!

Monday, February 28, 2022

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.

Thursday, November 11, 2021

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!

Tuesday, July 6, 2021

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. 



Sunday, June 27, 2021

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!


Wednesday, March 31, 2021

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!



Friday, January 22, 2021

13 Years

Today marks 13 years since my life was saved by donor lungs for the first time. Even though those lungs were replaced 10 years later, it doesn't take away from what they gave me. More time with friends and family, and a much more "normal" life. As with every 22 of Jan, my thoughts are with my donor's family.

My last x-ray with the original lungs and most recent x-ray with current lungs... Will always be a miracle.


I almost feel bad celebrating stuff at the moment, with all the sadness that is happening around us every day. People passing away due to covid. people struggling financially for the same reason. A helicopter crash that happened yesterday with members of my transplant team involved. Seeing friends who work as frontline workers being drained and exhausted, seeing people suffer from depression due to everything that's going on. Life is really hard right now. And it doesn't feel like there is an end in sight regarding Covid. 

Yes we'll eventually get the vaccine in SA. Much later than we should have, because we're not a first world country where things are efficient. Even then, it's not 100% effective. The one we're expecting to get is 70% effective. Combined with all the people who are going to refuse the vaccine (according to one article I read, 53% of SA's population), there will be no herd immunity and it definitely won't be safe to have a normal life again. Covid has really cast a spotlight on how many stupid, uneducated idiots live among us. 

I was supposed to have a transplant check-up today, but it was cancelled due to the current wave of Covid. I'm just glad that I had my hysterectomy when I did in Nov last year, and that it's over and done with. For now, all is good with my health and I'll take it. 2021 looks like it will be rather bleak, but I think you just have to take it a week at a time. I've been through worse, even though this is very different.



Thursday, December 17, 2020

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!!!