New Lungs, New Life... for a second time 💚

As most of you know I've been in chronic rejection of my bi-lateral lung transplant that I received in Jan 2008 since the beginning of 2013. I had a course of 24 sessions of Photopheresis in the period between Aug 2013 and May 2014. It was deemed successful as it drastically slowed down the decline of lung function that I was experiencing mid 2013. I was still able to take part in the National Transplant Games towards the end of 2014 in Stellenbosch (I couldn't play squash or do race walking anymore, but had some training in shot-put and discus. I was pretty bad at it, but I really wanted to compete!). At this stage they had never done a second bi-lateral transplant in SA before, but I hoped that they would consider me when the time came.

In October 2015 I as admitted to hospital with a Pseudomonas infection. I used to culture this bug with my old CF lungs, but never with the new lungs. However it loves diseased lungs and mine were now at the point where Pseudomonas deemed it a good time to return. After two weeks in hospital I went back to work. In January 2016 I was admitted to hospital again... not feeling well at all. A biopsy was done and unfortunately both lungs collapsed in Recovery. I was told that this was due to air trapping, which happens with the kind of rejection that I had. I woke up in ICU with 2 chest drains, and after a month in hospital I was able to return home, but I was now on oxygen 24/7. At this point I also stopped working. I was admitted another two times in 2016 with the same bug.

Towards the middle of 2016 I underwent the work-up process for transplant again. It was more comprehensive than the first time around. I had to keep my weight up even more and see a biokineticist twice a week, along with frequent Drs visits obviously (dentist, gynae, lung Dr, dermatologist, had scopes done...). I was placed on the waiting list again during the second half of last year. This year my lung function fluctuated between 24 and 30%. I was hospitalised again in August with a cold and returned home with another new bug :-(.

I was really starting to get depressed, as the work we do with Love Life; Gift Life has showed me how much is lacking with organ donation in this country, and how the number of transplants performed has declined since my first transplant. Somehow patients on the waiting list were being let down by some people who work in the field yet doesn't know what it feels like to hold your breath waiting for an organ, while seeing others on the waiting list pass away. I had to keep telling myself "If you hold out long enough, statistically there HAS to be lungs for you someday. By the way, please tell your family of your wishes to be an organ donor via our website! Your family are the ONLY people who have a say regarding what happens to your organs once you pass away, so if they don't know it means nothing.

A few weeks ago, shortly after midnight, my phone rang. It was my Dr!!! He said that they possibly had lungs for me!!!!! We had to be at the hosp by 3am. We calmly packed and got ready. I started trying to get hold of family members and close friends. I was extremely excited!!!! My mom and dad joined us at the hosp a little while later. The waiting part at the hosp was a bit of a blur... I tried reading, had to take a bath. Took a selfie. The time between the call and the transplant was a lot easier this time around! It was much shorter and we didn't have to fly from PE. I would definitely recommend to anyone on the waiting list to live close to your transplant centre! It takes off a lot of pressure! This also applies to post transplant.

They took me to theatre at about 8am. I wasn't nervous at all, just hoping and praying that the lungs will be good and that it won't be another dry-run (story for another day).

I came out of theatre at about 16h00. The surgery had gone really well, and I didn't need ECMO in ICU (only VA-ECMO in theatre). Read more about ECMO here. This is quite amazing, seeing as I'm a retransplant. With my first transplant I was ventilated for 4-5 days, so we expected the same at a minimum. However when Chris called the next morning I was sitting up, off the vent and talking!

I was so surprised when I woke up and heard that it's only the early hours of the next day! It motivated me to try and push myself to get out of ICU. My ICU experience this time around was much better though. Probably partly because I knew what to expect, and also because it's a new ICU which is much nicer than the old one! I did have some hallucinations of people talking and music playing, and I was quite confused a couple of times. Medically it couldn't really have gone any better though.

On day 8 I was moved to Section 7, which is a big step in the right direction. I still had 2 drains in... one of the big intercostal drains and a Euroset (which is actually also 2 drains). The intercostal ones are really thick and pretty sore. Thank goodness for pain meds!

The Euroset is placed in the soft tissue and not in the rib-cage itself, so they are much less painful.

It was a bit annoying though that the Euroset didn't want to stop draining and probably kept me in hospital for an extra 10 days! This is mostly a combination of a medication that I was on before this op that prevents healing (it was one of my anti-rejection pills), and the fact that it's a second transplant and they had to go through a lot of scar tissue. It gave me the opportunity to build up more strength in hospital though. The best part was getting rid of the supplemental oxygen after about day 10 post op, and walking around the hospital with no oxygen, drains still in but great O2 sats.

So I've been the first successful redo of a bi-lateral lung transplant in South Africa as far as I know. The last few years have been quite tough, so I'm really hoping that in the next few years Chris and I can live our lives a bit less stressed again, and that the easy breathing will continue. We would love to travel again. I want to take part in the World Transplant Games again. I also want to be able to do more for Love Life; Gift Life and help us transform organ donation in this country. Right now I'm still being monitored EXTREMELY CLOSELY, as all of this is a first and my Dr is being super vigilant. But at least all these dreams have a chance of becoming a reality now, thanks to my donor family. I have so much love for them that I can't actually put it into words (although I will try when I write them a Thank You letter). Thinking of them every day in their time of grief, especially with the holidays coming up :-(

New pill progress and RIP Emma kitty

Firstly, Friday was 9 years 8 months with the borrowed breathers. Go lungs go! Every month I wonder if this is the last month that I'm celebrating the lungaversary with these lungs. However they continue to carry me and I'm so grateful for that. 

Since starting the new blood pressure medication my heart rate has dropped tremendously. My Fitbit's strap broke, so I haven't worn it since Sunday or so, but in the first week of being on Concor my heart rate has dropped 20 beats per minute! And it has dropped even more since then. So that has made me feel a lot better. I'm still very out of breath when moving around but at least my heart feels less like it's busy exploding. And that's always a good thing. It's kind of scary what a tiny little pill can do... I have slightly more energy too I think, although I hope I didn't just jinx it by saying that. My last sputum sample that I did 2 weeks ago showed Pseudomonas again, but since my infection count was really low we're just carrying on with the antibiotic nebs.

My parents have had to put my old cat Emma down just after my last blog post... :-( I got Emma in April 1999. She was a very difficult cat, who bullied all the cats who came after her... so much so that for a period of 9 months we had to let her stay with the breeder again until the new kitten we got grew up. She loved my sis much more than she loved me, although if there was no one else for her to sit on she would sit with me. The below pic was taken in December last year. Ten years ago when I was waiting for my transplant I never thought that I would out-live Emma. She had become blind and her kidneys were failing unfortunately. She has also (ironically) never been the same after the other cat Lily (who she almost killed) died about 2 years ago. RIP Emma kitty.

Not much else has been happening. Time seems like a bit of a blur. I'm a little bit in shock by the fact that it's almost October. Adriaan has been adorable as per usual. The kitties keep us amused.

Oh almost forgot, I went to see Jessica at her photopheresis session yesterday in Pretoria. Also wanted to say hi to the "vein whisperer" Cecelia who made my 24 treatments so much more bearable. I'm their longest surviving photopheresis patient so far it seems (I think I was the second lung transplant patient who had this... not sure... but def one of the first here in SA.)! Very strange to think that! The treatment never improved my lung function or kept it stable immediately, but it did slow down the decline of my lung function significantly. So it was successful! Can't believe it's been more than 4 years since I started the treatment back in 2013. It's been a crazy few years...

Second Sunday in Hospital

Day 12 in hospital! Nearing the end of my stay I think. Lungs aren't feeling as good as I hoped they would feel after 12 days of IV antibiotics to be honest. Pseudomonas was cultured in my sputum as I suspected, and not sensitive to many antibiotics at all... Lungs are possibly also struggling from the inflammation as a result of the Rhinovirus. So maybe they will bounce back later... I can only hope. Below is a pic of my PICC line.... as requested by some people. It's my best friend at the moment :-p

Right now my only aim is to get mucus out... it is soooooo sticky!!!!! Using Pulmozyme for the last 2 days (Inhaled medication that I haven't used in literally almost 10 years that breaks down mucus and makes it much more watery. I used it often with the old lungs). Walking also helps... as well as lying on my left side. Nothing more frustrating than hearing an orchestra in your chest and nothing comes up when you cough!!!! My infection count has also kinda just been up and down... Meeehhhhh. On the plus side my kidneys are fantastic. I love them.... thank you kidneys for putting up with 33 years of crazy meds. You rock. As do all my other organs minus the pancreas... sorry pancreas, but at least your function can be replaced by enzymes and insulin.

Had another lungaversary this week too, woohoo!! And of course the highlight of my weekend was seeing little Adriaan!!!!! I just want to cuddle him to pieces!!!! The little dude has totally stolen our hearts! Totally the highlight of the year! Not much else to report on. Enjoy the last few days of August!

Sunday in Hospital

Got admitted to hospital on Friday after not feeling well for a few days. Been having a low grade fever and bad headaches and feeling a bit more short of breath. So after a 5 month break from hosp I'm back! Can't complain though, 5 months better than the previous 3-month breaks. And I was worried that this might happen close to Christmas and that would have been way worse.

Before this bout of "sickness" we had a great time last weekend in Secunda meeting the cutest little baby boy Ben!!!! He is soooo flipping cute. Had so much fun playing with him.

Workouts have also been going well before this week... got some new inspirational exercise clothing from Mr Price Sport. Hopefully I won't lose too much muscle in hosp now :-( Will need to make sure I try to keep on moving.

At least I also have some more time to work on my current crochet blanket. This one is for Chris (despite the pink in there!). Going to be epic once done.

Not much else to report on, although I think that was quite enough action for one week. Will be in hosp for 2 weeks.

Freedom

Home after 16 days in hospital and very happy about it!!!  Got discharged late Friday evening, and had the most amazing sleep till after 10AM yesterday morning. We celebrated my mom's birthday with lunch out (had what tasted like the most amazing steak in the world) followed by coffee and lemon meringue pie at my parents' house. Spent the rest of the day just unpacking and doing laundry. Lungs feeling better than when I was admitted so hopefully the feeling lasts.

Kitties were relatively happy to see me... As can be seen in the above pics they ignore me but Peppy (black one) cuddled tightly against me the whole night on Friday. Have a rather busy week planned... stocking up the house with food, seeing biokineticist, having hair cut, need to go to pharmacy, catching up with a friend... Thursday is a public holiday, and Chris has taken leave for Friday, so we'll just chill together at home on those two days.

All in all just very happy to be home. Less than 3 months before Anna and Casey arrive, so getting VERY excited about that. Need to start prioritising all the things we need to show them in Joburg! And try to keep lungs stable!

Very quick little update

So the most exciting news in recent times is that we had someone run the Comrades Marathon for Love Life; Gift Life! He is Justin, the owner of Justin Jeffery Biokineticists the place where I go for my weekly bio sessions. It all came together very quickly but was something really cool, and hopefully just the start of more such big things.

We have also set up our Twitter page now (see side panel on my blog) so please follow us and like on Facebook etc! Need all the support we can get!

I'm currently in hosp for my regular Pseudomonas infection. Two weeks of IV antibiotics. Almost half-way at least. Feeling a lot better than a week ago already.

Can also finally post my latest crochet blanket, that was a wedding gift for Ditha and Riaan. Did a new pattern as you can see! Was lots of fun to do. And today is the last day of May!!! Where has the year gone???? It's good though cos it means Anna and Casey's visit is closer, but wow....

May... The month of CF awareness

Today marks the first day of Cystic Fibrosis awareness month. Even though I've had a double lung transplant over eight years ago CF still affects me. I have to take digestive enzymes when I eat, because of thick mucus in my pancreas that block the exocrine movement of the digestive enzymes.

I also have CF related diabetes so I need to inject myself when eating carbs. The pancreas contains the islets of Langerhans, which are responsible for making insulin, a hormone that helps regulate blood glucose. Damage of the pancreas can lead to loss of the islet cells, leading to a type of diabetes that is unique to those with the disease. This cystic fibrosis-related diabetes (CFRD) shares characteristics that can be found in type 1 and type 2 diabetics, and is one of the principal non-pulmonary complications of CF (copied a bit of Wikipedia there). The anti-rejection meds I take like Prograf and Prednisone also does not help with this!

Since having the Pseudomonas bug in my lungs again I've also been doing some old CF routines again, like nebulising... luckily without the extra mucus.

However CF is more than just a set of symptoms. Growing up with a very bad life-expectancy changes you. In many ways. Some more than others. Most CF sufferers rebel at some stage (I did), they go through denial (I did), they are fighters (in most aspects of life fortunately or unfortunately). We lose a lot of friends and it kind-of makes you hard and hate this stupid disease. You don't have much sympathy for normal people complaining of a cold and you wish they would stay the hell away from you.

Most of the CF people I know have tattoos.... they mean different things to different people, but my one friend put it very well... she said "My body's been hurt so much and I have so many scars from medical procedures, I made the decision to put a pretty scar on my skin that means something to me". Some CF people don't plan for a future because they get told they won't live to be very old. Then when they exceed their life expectation they feel "lost". On the other hand your get those who does everything full-out because "life is short and time is precious". Also, contrary to what my medical history suggests, I'm still rather scared of needles and HATE having a drip put in.

Adulthood is more complicated, males are sterile and females have reduced fertility.... but deciding to have kids brings with it a whole new set of questions. Keeping a job with frequent hospitalisations is near-impossible (I could never do it with my old lungs). Finding partners, getting married, trying to explain everything you've learnt over the years to a new person. Getting to end-stage CF....

There are a few positives though.... since the advance of the internet, the on-line CF community has become very big. It's amazing, since we're not encouraged to be physically close to other CF sufferers due to the risk of germ transfer, so your on-line friends are often your life-line. You also meet some amazing medical people along the way... who become friends and make hospital stays so much better. Don't have much else to say... hopefully someday they'll find a cure for this.