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. 

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. 

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.

Terrible week and setback (longish post!)

So last week Friday I had the cast removed after my Achilles tendon repair on 1 November. It went well, and the surgeon was really happy with how the wound had healed. The next step was to wear a shoe with a heel for 6 weeks, in combination with physio, to stretch the tendon out again so that I am able to put my foot flat. My foot was in a toe-pointing position in the cast, so I was unable to put the foot flat. I took some sample shoes with to the Dr, so that he could SELECT which shoe he thinks is best, and he chose my wedges. I'm specifically mentioning this, because I've had many "why were you wearing those shoes?!" questions!

I had to make a stop at my lung dr too, as he had to decide whether he was happy to let me return to my usual anti-rejection meds combo. (I had to stop taking Certican and increase Neoral in order to assist the healing of the tendon). He said that he wasn't quite comfortable doing that yet, so I stayed on the high Neoral dose. (In hindsight - thank goodness)

I had a very nice weekend, visiting Fawn on Sat, and on Sunday Brendan and Marius had a Christmas Pool Party at their place which was so much fun. It was AMAZING to have my leg "free" again, even though it was so thin! And putting it in the pool was like heaven, after the weeks of itching. On Monday morning I went over to my parents' place to visit them and my nephew. I was walking towards their patio door along the side of the house, which has some uneven surfaces, carrying my handbag, a magazine, some biscuits and a toy, when my mom came out and told me Adriaan was sleeping. As she spoke I looked up, and stepped funny with my left leg... and fell....

I felt immense pain, and completely collapsed into the plants. My dad came to pick me up, and got me on to a chair. Blood was gushing out from underneath the bandages on my wound :-( My parents managed to stop the bleeding, and my dad took me to casualty. Luckily they live extremely close to the hospital. When they took the bandages off in casualty we could see that my ankle had actually split open horizontally (so NOT along the scar), and there were pieces of tendon actually sticking out. Quite a gross picture. Luckily the surgeon who did my tendon repair was on call, and emergency surgery for the same day was booked.

Surgery was much less pleasant than the previous time. The spinal block was EXTREMELY painful, I don't know what went wrong there. Drip access was an issue, and I came out looking like I'd been in a fight with someone. I actually just couldn't stop crying at my bad luck, the pain, the way my day turned out, and what this new injury meant for my future. The verdict was that the Achilles tendon HAD snapped again, but in a different spot than the previous time. So the 1 Nov repair was still in tact. It had now snapped way lower down, almost at the bone, and they had to use artificial tendon to repair it. Because of the infection risk due to the open wound I had, I also had to stay in hospital for a few days on IV antibiotics to make sure that I don't get an infection. There was also a drain in my foot this time. I was in hospital for 4 nights, and came out yesterday. Thankfully no infection emerged, and my bloods were looking great the whole time. My veins however are shot from the drip attempts and the daily blood draws. And 34 years of needles in general. Yesterday morning they had to draw blood from a small vein in my wrist, and it was more painful than any blood-draw I'd ever had.

The only positive thing from this whole hospital admission was that my lungs are just superstars. The anesthetist made a comment after the surgery that it went really well and that "you are really fit". In theatre my O2 sats were 100% and 99% the entire time that I was awake. In the ward they were consistently 98%. It was quite strange being admitted for something that had absolutely no lung involvement.

What this means though is that I cannot play squash anymore, as it is just too risky for me (assuming these injuries even heal fully). 27 Years of prednisone use has taken it's toll on my body. These days they don't treat CF patients with permanent steroids, but in the 80's and 90's it was the thing to do... in PE anyways. Since the age of 7 I've ALWAYS been on differing doses of it. And post transplant it's used as an anti-rejection medication, albeit at a MUCH lower dosage at least. Like my Dr jokingly put it, "my" lungs are out-living my body. Back in 1990 when they started me on Prednisone they were hoping I survive the year. Nevermind the next 27 years. And it if weren't for my 2 donors I wouldn't have lasted this long. The bottom line is, I need to find a new sport (currently I'm thinking swimming!!! And carry on with spinning in the gym). Also, the 2019 World Transplant Games is out of the question. I'm extremely sad about it. I worked so hard to regain fitness after my second transplant, getting squash coaching, qualifying at Nationals, re-qualifying in October... It feels like such a waste now.

So I'm back in the cast for 6 weeks. 2 Weeks of keeping the foot up for as much as possible. Then I can start walking on the cast again. I've told the surgeon that I'm not comfortable with wearing heels after the cast comes off again, and he mentioned the option of a brace. So I will be seeing him again on the 18th of January to organise the brace. At this point I'm just hoping it will recover as much as possible. It will never fully recovery from this. I just want to be able to walk normally again :-( We have a holiday planned for March, and I'm not expecting to be able to hike or anything, but if I could just walk a medium distance at ease... that would be great. Sigh.

Below are some pics of this weekend's xmas pool party when my leg was free...

Dad's birthday, Biopsy and Lump-thingy

Firstly, yesterday was my dad's birthday!!! We'll be celebrating with lunch on Sunday! He's the best dad we could ask for! It might sound like a cliche but it's true!

On Monday I had a lung check-up. I was a bit worried about my lung function because I've been a bit sick since Friday with a head-cold. I didn't thing that it had gone to my lungs but it's the first time with these lungs that I've been "sick". To my surprise the lung function was up by 2%! Yayness!!!! And my CRP was only 11 (infection marker... 11 is low). X-ray and rest of bloods were fine too.

So about a month ago I felt a strange lump just above my scar on the left side. Like a little movable "ball". Quite freaky to be honest. With my appointment 2 weeks ago my Dr said we can just keep an eye on it. It had been feeling bigger for the last few days and Dr confirmed it on Monday, and said it has to be removed asap. He wasn't sure what it was, but glad he decided to have it removed, because things that move on your rib cage feels strange. So it was scheduled for yesterday, along with a biopsy while I was in theatre anyway. (If it hadn't been for the alien lump we would have skipped the biopsy for now, seeing as lungs are doing well.)

Everything went well. Biopsy was fine. Woke up with a pressure bandage where the lump was but no pain at least. Had to spend the night in hospital as there was quite a lot of bleeding apparently with the removal. The initial verdict is that it is a stitch that my body had reacted to and had scar tissue formed around it. Hopefully it doesn't happen with more stitches?? I don't even know where exactly it came from! Apparently there is also a very tiny one on the far left side close to my armpit but it's so small my body "will take care of it"... Alien lump was sent off to pathologists. A new scar!

As I was admitted to my room (my lucky room that I was in after both my transplants!), they took my vitals, and seeing 100% O2 sats is so cool. Actually I think this is also a really "lenient" machine, as my sats are normally 97% or something, but it was great to see. I'll take a friendly monitor like this any day! Plus it can't be TOO far off, it's used in a hospital! The x-ray below was from when I was in recovery. You can see where the pressure bandages were on the right side of the x-ray picture (so over left lung).   

Bandages are off now, just some micro-pore tape over the new (dissolvable!!!) stitches. Hopefully the biopsy results come back great, like with the previous two. Not much other news really, but think this enough for a proper update!