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. 

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.

2 years 5 months

Tuesday marked 2 years and 5 months with these second transplanted lungs. Coincidentally that miracle also happened on a Tuesday! (As well as my first transplant!.... it's my lucky day!)

Being in lock-down has obviously given me loads of time to think. And the recurring though is I'M SO F@CKING LUCKY AND BLESSED. How am I almost 36 and still here and doing better than ever? I'm still the only person in SA who has survived a redo lung transplant (which sometimes leads to survivor's guilt, but that's not what this post is about.) Is there another shoe waiting to drop? I was trying to count all the surgeries I've had earlier today with some Facebook quiz, and I got to roughly 20ish.

• 2 Bi-lateral lung transplants
• 2 Nissen Funduplications
• 2 Achilles Tendon Repairs
• Wisdom Teeth removal
• At least 6 Lung Biopsies
• About 5 gynae ops (immunosuppression related issues!)
• 3 Gastroscopies, one which included a colonoscopy 

Not all of them are significant but it's still under General Anesthetic (except maybe wisdom teeth, I think I was only sedated... and possibly 2 of the gastroscopies).

I've also had a renewed gratefulness for being able to sleep on my stomach. It's my preferred position for falling asleep, and I've been remembering many times when I've been unable to do so. I remember specifically quite a few times where my lungs struggled too much to lie on my tummy. This was with my original CF lungs, where I often had to sleep on 3 or 4 pillows to breathe better. I remember my back getting sore and just wanting more than anything to lie on my tummy but when I did, I either started coughing up blood or it just felt like I was drowning. The other significant times were after my transplants, due to the incisions. At least those were "positive" reasons, but it kept me awake at night, and with my Nissen Funduplications. I know this is REALLY random, but like I said... blame the lock-down.

I've also been thinking of stuff that's happened since my second transplant... in other words things I would have missed out on if I didn't get a second donor. This was what I could think of (in no specific order):

• Holiday in Ballito
• Two holidays at Storms River Mouth
• Family holiday at Evelyn Game Lodge close to Mapungubwe
• New York trip
• watching my nephew Adriaan go from being 6 months old to turning 3 tomorrow
• getting a divorce
• moving into a flat and living on my own for the first time in my life
• working for Andrew
• joining a running club and doing Parkruns
• going to the UK and Scotland
• dating
• getting a new boyfriend
• Two trips to Cape Town
• going back to gym
• started playing squash again, tore the Achilles tendon twice and now don't play anymore
• co-founded a new NPO, TELL
• holiday with friends in Mauritius
• in lock-down for a global viral pandemic!

I added the good and the bad, because it's all part of being alive. And I wouldn't have wanted to miss any of it. I hope everyone's lockdowns are going well. I'm still all good, trying to stay sort of active. Sleeping a lot. Eating a lot. Be prepared for more random posts relating to stuff that pops up in my memories!

A third of my life - 12 years

Last week Wednesday marked 12 years since my first transplant. Exactly a third of my life so far. A third of my life with no constant mucus trying to smother you. No persistent lung infections. No problems with being underweight. No super disgusting cough or coughing fits where you can't catch your breath. And most of all, 12 years of not being dead. So much love for this donor family.

Those lungs also enabled me to have a successful second transplant. During my rejection they were stable, and allowed me to stay physically strong and reasonably healthy otherwise. So they really behaved very well.

But back to the present.... joined my local neighborhood running club yesterday, and the first run is tomorrow. Sooooo nervous. But I have to do this in preparation for the National games in June, as well as to push myself... otherwise I'm stuck in the same gym rut and struggle to push myself. I think I have breathing-related PTSD. As soon as I get too out of breath I feel like I need to stop because this is bad. Even though it's normal to get out of breath when you run! So I need to run for a bit longer before I give in to walking.

I shared the above poem on Instagram a while back, it's written by a CF guy who has also had a lung transplant. It's quite direct but touches me very deeply. I can totally relate.

Deaths, statistics and lung functions!

This past few days, two people that I knew in the lung-community passed away. Amber was 14 years post transplant. I've had contact with her since my first transplant, and she sent me a copy of her book when I had that transplant. She's had chronic rejection for a while, and from what I can see on Facebook, picked up an infection over the last few days and passed away. My heart breaks for her husband and little boy Noah.

Gontlafetse was a Pulomary Hypertention patient here in Joburg, who got lungs a few weeks back, but didn't make it :-( I've met her a couple of times when she's been in hospital. RIP girls...

“There are three types of lies -- lies, damn lies, and statistics.”

I'm really hoping the above quote is true. The statistics for a redo bi-lateral lung transplant are pretty terrible. In about 6 weeks' time I'll be part of the 32% of people who've made it 24 months post second transplant.

In any case, I had my best lung function EVER with these lungs today! Soooo chuffed. Been stressing because I've had a sore throat for the last 2 days that I've been doctoring. Lung volume was 120% and FEV1% was 97%. WHOOP WHOOP! Soooooo relieved. To hear your lung Dr say "There is NOTHING about your health that is a concern right now." is like a miracle. Next appointment is on my 2 year lungaversary!

My birthday was fantastic. I had a great time with friends and family, and attended a fancy event on the evening of my birthday on behalf of a fellow transplant athlete. I enjoyed the dressing up! Here's to 35 being the best year EVER!

Complete heath update

Background - on 21 Jan 2013, on the eve of my 5 year lungaversary with the previous lungs, and my first check-up post the previous Nissen Funduplication, my lung function had dropped drastically, without explanation. It was the start of Chronic Rejection, that ultimately led my my second transplant, almost 5 years later.

Back to April 2019 ...  on Thursday I had my first lung check-up scheduled following the latest Nissen Funduplication... As a CF and transplant patient, many things can trigger a sort of PTSD reaction... Some CF patients actually get diagnosed with PTSD, and for the rest of us, like myself, certain things just trigger massive anxiety. Certain smells, the feeling of a nurse or Dr tapping my veins, flickering lights (those long tube lights, that have a slight buzz... long story)... Thursday's lung function test was one of these things. I was SO WORRIED that it would have dropped after the recent surgery. I had no reason to think that it would, but neither did I the last time. You start "testing" yourself every time you climb a set of stairs, or walk uphill. You start looking for the slightest sign of something being "off". You go to gym and push yourself with cardio to see if your lungs can keep up. Sometimes this helps, but it's a bit harder if you're physically recovering from surgery and two Achilles tears.

However I can breathe a sigh of relief.... Thursday went well... As soon as I'd done the lung function test I felt stress leave my body. My FEV1 was 91% and FVC 113%. Unchanged (slightly better than last time actually). I had gas pumped into me and chest aspirations on both side, plus surgery right beneath them lungies, but they stayed fine. I've also had to take my anti-rejection meds in liquid form (which somehow just feels a lot less accurate than taking pills), which has also added some stress. I'm SO HAPPY... I just want them to stay happy and safe. I want to tell them that things will get better from here, they will get more exercise again SOON!

What WASN'T fantastic, was my hemoglobin levels. They're supposed to be between 12-15... mine is 8. This is due to blood loss during surgery and my stupid liquid/soft food diet. I've been craving meat like a crazy starving person. I've not been prescribed Ferrimed twice a day, and bloods again in a month's time. It also explains why I've been feeling DEAD TIRED. Can't wait to start feeling better.  The other thing that needs to be watched, is my CMV viral load, as it was a bit elevated. So I'll repeat those bloods again in a month's time too, to keep an eye on it. Hopefully then I'll also be able to change back to Certican, and shed this layer of bodily hair that the Neoral has given me... I'm gross! Due to said low iron in my blood, we basically did nothing this long weekend. Saw the family twice and that was it. I slept, watched TV, worked on TELL stuff, and "ate".

In terms of the Nissen surgery, things are going OK. wounds look AMAZING, and pain completely gone. However my tummy is struggling. I'm either hungry or nauseatingly full. If I eat a few bites too many I feel sick. And Creon absorption seems to be random at best. Tummy has been upset a lot, and super confused, but I know this happens. Luckily food hasn't gotten "stuck" at all, and I haven't struggled with swallowing anything. It's just the volatility of my stomach that's getting to me. Also, not heartburn/reflux, so that's good. Check-up for that is 8 May, when the Dr will be doing a scope again to check the healing and final result. I just want to eat a burger and chips, or sushi, or a massive steak and salad, or a toasted sandwich... I want to eat until the hunger is gone and NOT feel like I need to vomit. From Wednesday I'm allowed "soft food"... aka mince meat and pasta. Hopefully that will also make me feel better.

So all in all, there are some frustrating things, but the most important thing, the lungs, are perfect.

Day 8 post op

So the redo Nissen Funduplication went MUCH better than anticipated. Unlike last time, I woke up with almost no pain. The Professor said that the surgery was complicated, but that he was happy with the result. They also did chest aspirations on the left and right side of my chest, which is not something I've heard about before. It sounds like they stuck a thick needle into the chest cavity to release the CO2 gas that they pump you up with for the laproscopic surgery. The Prof said that when they pulled my stomach down from underneath the lungs, a lot of gas goes into the chest cavity and it would have cause extreme pain. Excuse my non-medical explanation! The one on the left side left quite a massive bruise! The Anesthetist was FULL of compliments about my lungs though!! He said they sounded brilliant when he saw me before the op. Afterwards he said I was the healthiest CF patient he's ever seen (probably the only post transplant one too to be fair), and he also said my lungs were the best of all the patients on the theatre list that day... I was the easiest patient!

I came out of theatre between 7 and 8pm on the Wednesday evening, after a long day of waiting. The Thursday was BUSY... I had to go for a barium swallow test to see if I'm allowed to start my liquid diet. I had physio, saw the dietitian. was allowed to start the liquid diet, and had to go for "wound education" on how to look after the incisions at home. I was also given a follow up appointment date for 8 May, where I will be getting a post-op scope. The whole systems sort of functions like a machine! Discharge was on Friday, about 36 hours after the op! The most painful part was trying to get a drip into my crappy veins :-(

I now have 23 "hole" scars on my torso... 7 from first transplant, 5 from first Nissen, 6 from second transplant and now another 5. This is excluding the big scars from transplant and ECMO, or little scars from central lines. I do feel a bit like a voodoo doll with the crazy Achilles scar plus these 5 fresh ones though!

Yesterday was my nephew Adriaan's birthday!!! He's 2 years old now! I've been able to spend some good time with him and the rest of the family this past weekend! Annelie (my mom's sister) was also here this weekend, so it was great seeing her too.

Apart from being hungry all the time, that's the only news for now. Let's hope this surgery was a success... and no more surgeries anytime soon! I've had ENOUGH!

New Year's Resolutions 2019 and garden make-over

My New Year's Resolutions are similar to last year's ones... Don't want to go into too much details, but here they are:

• Look after lungs/health as much as is humanely possible and avoid rejection. This means religious check-ups, bloods, x-rays, being in touch with my body and acting upon it if anything feels off... avoiding infections at all costs, never forgetting my pills, and also just looking after the other stuff that is affected by CF... diabetes, gynae checks, bone density, dermatologist. 
• Travel as much as finances and my Achilles tendon allows for. The ultimate would be to see another country again!
• Recover from Achilles tendon tears and be able to maintain fitness without playing squash or any other such risky activity. I'd like to start swimming again, maybe as a more serious sport (if I'm any good at it). So by the end of they year I'd like to be fitter than I was at the end of October, when the first tear happened. I refuse to let the years of cortisone cripple my life completely. F@ck you CF.
• Enjoy every moment of quality time with family. 
• Buy less and save more. I have enough clothes, and I think we have everything we need in the house. I want less clutter (our house isn't too bad, but I've been throwing out a lot of old sentimental stuff that I've been keeping for YEARS... I'm trying to be more brutal with what I get rid of. I'm also organising cupboards one by one - anyone else watching Tidying Up with Marie Kondo????). Plants don't count... but I will try to think twice before buying it!
• Make a bigger success of TELL than LLGL ever was. We can do it. 
• Just appreciating every single day... good or bad. At the moment most days feel frustrating due to my injury, but if it wasn't for my donors I'd be dead twice already (if that even makes any sense). Both of my donor's families would give anything to have their loved one back. My "bad day" is nothing compared to having lost you daughter/mother/wife/sibling.

That's it! In a year's time we'll see how well I did! 

This is my 10th week of being injured and pretty much in a cast. One positive thing however has been that I got to see quite a bit of my nephew Adriaan. Not due to my injury per se, but just because he has been on holiday as well and I've been very available! I love the little man so much, and he has really brightened up my December! Here are some pics, including some Christmas pics (I never even blogged about Christmas.... it was chilled... just spent with my family and eating too much).

My other exciting project for December was a bit of a garden make-over! I've always loved gardening, but during the last few years that I've been too short of breath to do much gardening, it has become neglected and quite overgrown. I decided to get a little bit of professional help in, and had a local business assist with some landscaping. They put in new borders for the flower beds, and took out some pavers that were at the bottom of the garden that I didn't like and didn't serve a purpose.  They also took out some of the irises that had gotten out of hand. Here are the before, during and after pics! Ads and my sister also helped with the planting of some new plants for me, as you can see!

I think it's looking so much better now! And we've had some nice rain, which is helping. By the time summer is over it will look pretty great! Very happy with the result :-)

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...