Tuesday, November 24, 2020

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. 

Tuesday, November 3, 2020

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. With Peet. 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.

Saturday, September 19, 2020

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.

Sunday, August 30, 2020

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. 

Tuesday, August 4, 2020

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!

Monday, June 22, 2020


I had my follow up lung function test today. The previous one was just over a month ago, and it had dropped a bit from the previous time. It was a bit scary because there has been a few drops since Sept last year. It was 97% at the end of Sept, 94% in Dec, 92% in Feb, when I was a bit sick with Rhinovirus, and then last month it was 89%. So my Dr suggested I repeat it a month later. I haven't actually SEEN my Dr since the beginning of Feb due to Covid, but at least there is whatsapp. He didn't seem too concerned, but I was.

I had to do a Covid test last week, before being allowed to blow on the lung function machine. The results came out on Friday evening so did the lung function this morning. It was back to 93% FEV1% at least and 118% FVC! Yay! Feeling SO relieved!

The Comrades 10km was fun. I did another 10km yesterday with my mom. It's nice to slowly see some improvement!

My nephew is being super cute as always. So nice to be on the same property as them! It's been extremely cold this past week, and winter still has a long way to go. Although at least technically the days are getting longer again from today.