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!

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.

Cancer Scare

What. A Week. What started out as me being worried that I have Covid, turned into me being worried I have cancer that has already spread.

On the 8th I started feeling a bit crap. Extremely tired, headaches, sore body and some random nausea. I thought I had exercised too much, because I did sprints on the Monday, so thought my body was sore from that. On the Thursday I went for a Covid test, which was negative. On the Friday my Dr sent me for bloods, as well as another nasal swab for other respiratory viruses such as flu. On Saturday it showed that all those results were normal, but that my infection markers were very high. So I went for another Covid test. It was negative again. On Sunday I felt rather like death, and there was a bump under one of my old drain scars that was very sore and swollen. My Dr said I should be admitted.

I saw him on Sunday, and he said the lump might be an abscess, which would explain the infection levels and the pain etc. I started Augmentin antibiotics, had a chest x-ray done immediately, and had an ultrasound booked for Monday morning, plus a lung function test. Chest X-ray was normal (and beautiful to me, as always, may I add). 

The ultrasound of my scar just showed scar tissue. No abscess. I started feeling even more feverish, and by the time I got fetched for lung function, I was shaking so badly from having a high temp, that it was decided that I'm not going to do lung function because it wouldn't be accurate. My lungs didn't seem to be the problem anyway. Dr then suspected a broken rib, and booked a bone scan. You get injected with some sort of radioactive fluid 3 hours before the scan that gets absorbed into your bones, and makes the scan possible. The white dot on my arm was where I was injected. By then I was feeling much better though, and the fever had stopped completely. (Note how nicely you can see my N95 mask on the scan)

The bone scan report stated that there was possible bone metastases.

"Bone metastasis occurs when cancer cells spread from their original site to a bone. Nearly all types of cancer can spread (metastasize) to the bones. But some types of cancer are particularly likely to spread to bone, including breast cancer and prostate cancer."

Dr immediately ordered x-rays of my sternum and femurs. This is where the suspected metastasis was. I also had a mammogram done, as well as a full abdominal ultrasound. Those were both normal. There is a cyst on a kidney and my pancreas but those are nothing to worry about. Boobs are fine.

The report came back and mentioned "Non healed sternal fracture" and more concerning, "A lytic bony lesion in this region cannot be excluded". Obviously I googled that, and Dr Google informed me :  Also known as bone lesions or osteolytic lesions, lytic lesions are spots of bone damage that result from cancerous plasma cells building up in your bone marrow.". So bone cancer fears.

Next Up was a massive CT scan with contrast, all the way from above the knee to neck. My kidneys had to be prepared for this, as the iodine that they inject can be rough on them. So a Bicarbonate drip was started Wednesday afternoon. I also had to drink Solmucol for kidney prep, and Gastrografin (Gastrografin is a contrast medium which contains iodine. It is used to clearly show on X-rays the area of your body that your doctor wants to investigate.). On Thursday morning I was woken up at 6:30 (after just falling back to sleep from the daily bloods and observations) for more gastrografin. CT scan was set for 8:30. Unfortunately there was a big trauma case(s), and I only went for the CT scans at midday. By which time I had to be given a glucose drip due to my blood sugar dropping too low for a second time. The injection of the contrast was extremely sore, my little vein was on her last, and I suspect it was a LOT of contrast. 

By this time I felt like my life was over. That 13 years on immune suppression had caught up with me. That despite regular checking for skin cancer and pap smears, another type of cancer had decided to come and take me, and that it had even metastised already. I was making plans to use the rest of the money I have to travel and just die with lots of morphine. No chemo. I felt like life was playing some sick joke on me. I would die with perfect lungs. I wanted to scream and break things. Run away. Wanted to cry about how unfair it was, but at the same time, I've seen much more "unfairness" than this in my life with other friends dying young ect. So what makes me so special that I can't die after 10 years and 3 years with transplanted lungs? I've already surpassed the averages. Why is this unfair?

At 15:00 my mom came to visit, and at about 15:15 my Dr walked in and said the CT scans were fine. I can go home immediately. It felt like I had won the lotto. Shock. Relief. More relief. I don't think I have ever heard better news in my life. It MIGHT compare with being told they have lungs for you. 

The sternum issue is just the way it healed after 2 transplants. But there's nothing wrong with it. (I realised afterwards... the radiologists have never SEEN a healed sternum of someone who has had 2 bi-lateral lung transplants. There is just me who is alive in SA???). 

The femur has a tiny "normal" little growth that is not a problem either and happens. Most people never find out about it. So I'm clear. There is nothing wrong with me. By then the oral Augmentin had also fixed whatever infection there was. So I came home, feeling absolutely fine, apart from being tired AF, and like I've aged about 5 years in 5 days.

The lump under my scar had gone away by itself. It was still a bit sore to the touch, but was literally nothing. Unexplained. During this drama, my immune suppression has been lowered slightly, and Cellcept has been put back up, but Neoral and Certican are going to stay a bit lower.

These past two mornings waking up in my own bed with no fear of imminent death or needles being stuck into me, and breathing easily, has been heaven. Absolute bliss. I'm very far from ready to die. I have a niece on the way. I have my family. I have the best friends ever. I actually feel fucking fantastic (apart from the past 2 weeks). Better than I have felt in my entire life. This was the first hospital admission for being sick in over 3 years. 

I'm seeing my Dr again for a check up on the 1st of October. Hopefully all my bloods are back to normal, and I'll finally have that lung function test done. Saying this week was an emotional rollercoaster is putting it mildly. But I'm so so so relieved to be fine.

Last day of being 35!

Tomorrow I turn 36! My second 18th! Whoop whoop! I'm still super excited about birthdays and getting  old(er), because no one thought I'd live this long! And I mean I've had some major parts replaced to get to this point! I can honestly say I'm in much better shape physically than when I was 18! Tomorrow is also 2 years 10 months with the new new lungs!

August has been a good month. It was pretty busy as far as TELL was concerned. The weather is improving, which is great. The country went to level 2 of lockdown, which meant that last weekend I was able to get away with family for the first time in ages. We went to the Waterberg, to a place called Moonriver Lodge. We've been there before, in 2015. It was a really nice break. Had some great family time.

Healthwise I'm all good as far as I know. Managed to make an appointment with my lung Dr for October. It might not work out, but it will have been 8 months since I've had a proper transplant check-up, and it makes me anxious. Luckily I was able to go for lung function in May and June. However I haven't seen my Dr or had bloods and x-rays since the first week of Feb. So here's hoping the Oct appointment will happen.

This weekend has been really great, celebrating my birthday. Yesterday my mom made leg of lamb (my favourite) for supper, and today I went for brunch with my best Joburg friends, Andrew, Marius and Brendan. They really spoiled me, and it was so nice to be able to do that. The restaurant is really open and airy, and only every second table gets used. So I didn't feel unsafe. I've also been hanging out with the 3 of them for a while and as far as we know we're all healthy and very careful. 

In other super exciting news... I'm getting a niece in Jan!!!! Beyond excited. Cannot wait!

Also exciting September news: I'm going away for the long weekend to the bush again with Andrew, Marius, Brendan, and Andrew's sister Patricia and Jacques at the end of September. That will also be lots of fun. 

Birthday Month

It's August!!! July flew past, but not complaining! Really not much news here, hence the lack of blog posts. This month is a busy one though. It's Organ Donation Awareness month so have a lot of TELL interviews lined up. I turn 36 at the end of the month, yay! It would have also been my/our 10 year wedding anniversary this Friday, which is a difficult day for me. Just want it over and done with.

Adriaan is back in school, so I don't see him that often anymore. VERY happy for his sake that he can be with his friends again. He enjoys it so much. 

I've had some outside outings with Andrew, Brendan and Marius! It's been the highlight of those weeks! We're going to try and make it an "every Sunday" thing! And the weather is starting to warm up! Yay! 

I've also been spending time in the garden, and hanging newly framed pictures in my cottage. It's looking pretty perfect now! When I'm not working I have also rediscovered colouring in and building puzzles. It reminds me of both times when I was waiting for lungs, but it's quite soothing to do while watching Netflix. I've also finished a massive blanket I've been crocheting! It looks great on my bed and has been super handy during some cold fronts we've had!

Can't wait for spring to start showing. Joburg is looking really yellow and dead. A lot of my succulents have died with some bad frost we had. Some signs of hope and life in nature would be great right about now!