Saturday, October 28, 2017

Catch Up!

So October is almost done! What's been happening? Quite a bit but also nothing at the same time. Adriaan was Christened last Sunday. The whole weekend basically revolved around that, with Pierre's family being here from PE. I got to carry him into the church, so that was really special for me.

It was also 9 years and 9 months with the lungs, whoo hoo. Had a good Dr's visit on Thursday. Lungs stable, weight great, infection count super low (CRP was 3!), all the other bloods good too. Had a gynae check-up as well since my last blog post, and all is great. (My medical history includes a lot of  not-great gynae check ups and procedures, so right now I need to see her every 4 months to make sure all is under control.) So it's all good news.

Joburg is really showing off right now with all the Jacaranda trees in bloom! I took these pics on Weds when I went for blood tests. The pictures don't even do it justice though, but it gives you an idea of how pretty it is. The weather has turned pretty freezing this weekend for some reason. I thought we were going to get a nice storm but it missed us completely, we just got the wind! We went to a very nice birthday party last night, and tonight we're just chilling with Chrislie, Pierre and Adriaan. So in summary, things are pretty good right now. The aim is to keep it this way!

Tuesday, October 10, 2017

The downward slope towards the end of the year

October is already a third of the way through!! When did that happen??? It's all downhill to Christmas now I guess. At the beginning of the year I was so confident that I would be healthy enough to go away to Storms River for Christmas this year that I almost insisted we make a booking, as that place is so popular! Luckily we didn't...

We've had 2 fun evenings out at least. The first was to The Local Grill for Chris' birthday. We went with Chrislie and Pierre for some AMAZING steak. Afterwards we went to Paul's ice-cream in Hyde Park. On Chris' actual birthday we wanted to go to the movies, and we call ahead to ask if they have a plug/power point in the cinema where we could plug in my oxygen (where else do they plug in the vacuum cleaners???) but they insisted that they don't. Unfortunately the movie was only showing at Rosebank, otherwise we would have tried other places too. They said that they only have wheelchair access. They don't cater for people needing to charge. So in summary I'm too short of breath to watch a movie now. F@&king annoying...

The other fun night we had was at Andrew's house on Friday evening. He made some curry and we had an awesome evening!

Apart from that things have been quiet. Oh I've been featured on this website called "Power 2 Save" - an initiative developed by the American Society of Transplantation (AST)! They aim to increase public awareness around the importance of funding transplant research, donating organs and advocating for transplant health. So that's quite cool.

Adriaan also had his first school concert!!! It was freaking adorable. He was a sailor. He is in the Teddy Bear class and was the youngest baby there. He was super well behaved and totally chill in the limelight :-)

Friday, September 29, 2017

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...

Friday, September 15, 2017


I have reached a new level of tired this last month. I'm EXHAUSTED. Today my Fitbit is registering an all time high for resting heart rate... 98 beats per minute. On 4.5 liters of O2. And that drains you. When I'm making coffee or having a conversation my heart rate is 120. When I'm walking at a normal-ish pace with my O2 on 5 litres it's around 150. Right now blogging is pushing it to 109 bpm (and I haven't moved for about 20 mins). I have also stopped drinking coffee now as it's not worth the elevated heart rate that follows.

I don't feel like doing stuff anymore because the thought of it makes me tired. So my enthusiasm level for almost anything is zero. When I drop something on the floor it's easier to pick it up with my toes than to bend down. There are a few little "energy saving" tricks like these. Sometimes I go two days without a bath or shower because I'd rather spend the energy on something else. I've only been washing my hair about once a week. Priorities. And lack of energy.

I saw my Dr yesterday. Had bloods done the previous day. sometimes a high heart rate indicates infection, but my CRP is 10. (less than 5 is normal, but 10 isn't bad). All bloods are fine. Sputum hasn't shown anything yet, even though the stuff I cough up is very gross. He scanned my heart and it's normal, just beating very fast. blood pressure also high. So he changed my blood pressure medication to a new one, which will hopefully reduce my heart rate as well. I've been on a blood pressure pill since transplant, as one of the side effects of one of the anti-rejection medications is high BP. So let's hope the new one helps... if not, I will try both together.

Being this tired however doesn't mean I can just chill on the couch the whole day. I need to use my muscles, I need to stay as active as possible. I drag myself through various chores and activities (read - buy food and put petrol in my car, or visit someone, or go to the pharmacy) and live for that moment where I can actually relax in front of the TV. My beautiful nephew Adriaan is medicine for the soul... he makes me forget all this crap and makes me smile. Keeping busy with Love Life; Gift Life keeps my mind busy and inspires me. Keeping "busy" in general makes the days go by quicker. And every day that's over is one day closer to a new beginning.

I know you shouldn't wish your life away but I'm tired of this chapter. I never thought it would carry on this long. I want the next chapter to start so badly I cannot even put it in words. I want to have energy and enthusiasm for life again. I don't want to feel this anxious anymore. I want to be able to breathe again.

Monday, September 4, 2017

I'm 33!! Happy (belated) Birthday to me!

This picture pretty much sums up my exact feelings about my birthday, especially this year. Let's hope 33 is the new 23... because I got lungs when I was 23! My birthday was really great though. Chris took the day off, saw my family and some of the organ donation team that we worked with in Aug. I received such amazing messages during the day as well as presents! Just an extremely warm and fuzzy day pretty much. Also - I managed to get out of hospital 2 days before the birthday so the best part about it was being HOME. Home is completely underrated, and I don't think I've ever been this happy to be home after a hospital stay. On Sat evening my mom and dad hosted a few close friends for an amazing supper on my behalf . One day I will be able to host people at our place again! I appreciated it so much though and had a great time.

One of the great things about coming home is seeing how some of my orchids have started blooming! I have quite a lot of them and literally only ONE is not going to bloom this year. (The first one was a birthday pressie so can't take credit for that flower!)

It's also been great to see Adriaan a bit more again. He is at such an adorable age, and I could just hug him forever! Right now he loves eating your hands.

Not doing much this week... catching up on admin at home, ordering meds, going to bio... they picked up another bug in the sputum sample I gave in at hosp the weekend before I was discharged... luckily it's treatable with oral antibiotics, so I'm on my second 2-week course of antibiotics now (along with my normal Zithromax and Purbac three times a week and the inhaled Colistin twice a day... so 5 antibiotics in the last month. Bleh.

Have a great Sept though! Yay for spring!!!

Sunday, August 27, 2017

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, August 20, 2017

In hospital

My cold didn't blow over, it just suddenly flew into my lungs. I started being feverish on Monday evening, which carried on throughout the night. On Tuesday morning it felt like my lungs were DROWNING in very gross mucus. It felt like I had instantly lost 10% lung function. It was the first time with these lungs that I needed a wheelchair to get around the hospital. I couldn't cope with walking, even with my portable O2 on max. Luckily I was able to see my Dr pretty quickly and got  admitted, had bloods, x-rays done and PICC line placed for IV's. My veins have been through too much in the last 33 years to cope well with normal peripheral IV access. A PICC line is a long line that gets pushed up from just above my elbow all the way around my shoulder towards my heart. It's an absolute blessing... makes a hospital stay much less dramatic and requiring less needle stabbings (and blown veins)... plus I have more movement available in my hand/arm.

So far the only test results of interest show that I have Rhinovirus (basically a common cold), and had a high infection count (CRP). The latter has come down a lot now at least. I'm currently on antibiotics and a higher than normal dose of steroids, although luckily that is already being decreased. Still waiting for the results of the sputum tests. Feeling loads better already. I managed to walk to the coffee shop twice yesterday (with Chris carrying my portable O2), and lungs starting to feel more open. You know you're feeling better when you are requesting earrings from home at least! (The below wasn't a bad selfie, I was checking out my ears)!

Had some great visitors yesterday... Chris was here the whole day, bringing with him a Latte and my favourite Almond croissant from The Argentinean. Then Andrew popped in with some AMAZING hot chocolate. Chrislie, my mom and Adriaan also came to visit! Haven't seen the little man in almost 2 weeks! I was feeling so sick on Sunday that I didn't want to risk making him sick. He is such a little heart thief! I was also joined for lunch/coffee by Brendan, Marius, Trevor and Ryan later in the afternoon. Even got some flowers! So everyone has really helped to make my Saturday fly past by keeping me busy! I've got some great friends and even more amazing family. Have a great Sunday!

Monday, August 14, 2017

Crazy month for organ donation awareness, wedding anniversary and now I'm sick

Two weeks ago LLGL along with the transplant coordinators of Johannesburg started an awareness drive in the Joburg hospitals. It's been hectic and amazing! I've attended the drive at four of the hospitals so far. The conversations we've had with nurses and doctors have been amazing.... eye opening stuff! This work makes me SO excited! It is definitely my passion in life. We've also had some amazing volunteers assisting us!

A week ago was my and Chris' 7th wedding anniversary. We went out for brunch and an ice-cream. Wasn't feeling my best so spent the rest of the day watching TV.

I've had a cold since Sat unfortunately :-( Not feeling good at all right now. Throat sore, sinuses gross and sore, lungs tight. UUGHHHHH