Friday, September 15, 2017

TIRED

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

Friday, July 28, 2017

Andrew's birthday, Jo-Mari's visit, prepping for Aug and small update on the lungs

I've been so "busy"! It's great :-) By busy I mean I did one activity per day. It's all relative. Two weeks ago we celebrated Andrew's birthday with a bang! I had lunch with him on the day, and on the Friday night we went to Beefcakes in Illovo. It was such a blast, I've never had as much fun sitting down and watching a show! Had to turn my portable O2 up all the way to 5 litres!!! (Normally on 3 or 4 litres). I was useless the following day, but it was well worth it.






I received the most amazing "Open me when" package from my cousin Mia in Jeffreys Bay! It's such an awesome concept from Rare Diseases! It's a bunch of parcels with instructions like "Open me when you're scared", "Open me when you're hungry", "Open me when you're in hospital" etc. It's amazing, so far I've only opened two, so still a few to look forward to!



My university friend Jo-Mari who works in Quatar was here last weekend, so got to catch up with her as well. She had a stop-over in Joburg on her way down to PE. Such a treat.



My sis has gone back to work, so seeing much less of my cutie-pie nephew :-( Will be seeing him this weekend at least! It's my sister's 30th birthday tomorrow!!! The two of us will be going to a spa tomorrow afternoon for some pampering... wish I could make full use of the spa facilities... ie the pool, but will be freaking awesome anyway. Unfortunately I broke my stupid nail off yesterday when I picked up my laptop, so good luck to whoever has to do my nails!



I also met another lung-friend in real life this week... Martie! She has Pulmonary Hypertension. Was great finally getting to chat properly, although it wasn't for long. We will def be doing it again.


So this post is basically my life in pictures it seems... sorry! Don't really have anything substantial to say. I had a lung check-up a week ago. The only thing that has changed is that my 6 minute walk test results were crappier. I could walk the same distance (a little further than last time in fact), but my oxygen sats on 5 litres of portable O2 dropped to 77%, VS 85% in April. Saturday was exactly 9.5 years post transplant for me. Ten year lungaversary getting closer and closer...


August is going to be super busy, it's organ donation awareness month! (as well as my birthday month!!) Love Life; Gift Life has soooo much planned in terms of raising awareness in Johannesburg hospitals in collaboration with various transplant coordinators. It's going to be a good month.

Thursday, July 13, 2017

Fitness declaration, dreams and nostalgia

Today I miss exercising a lot. Intense exercise, not the sad weight-lifting that I currently do. Spinning, playing squash, running... It's been 4 years since I've been able to do this properly. Four years of gradual deterioration. Preceded by 5.5 years of the most amazing breathing ability ever known to myself. I miss it SOOOO MUCH and wish I had worked harder at my fitness when I had the chance. It wasn't easy with working full-time, but I wish I pushed myself harder. I should have played more squash, done more spinning classes, just more of EVERYTHING CARDIO. 


There is nothing like the feeling of your lungs FILLING with air, and your heart beating, not because you climbed a flight of stairs and want to pass out, but because you are ALIVE and MOVING. I think it's taken me 23.5 years of shitty breathing, those 5.5 years of brilliant breathing, and these 4 years of losing it again to totally appreciate and realise how brilliant it is and how it should never be taken for granted. 


If I ever get the opportunity to breathe freely with healthy lungs again, I will make it my goal to push my body to its physical limits. I will try new activities, I will join a squash club... I want to run further than before. I want to do spinning again! I want to SWEAT! I am able to do so little at a time now, that I haven't sweated properly in AGES (except when my blood sugar drops too low, but that's a whole different topic!). I swear there will be no stopping me... 

This is what I dream of... it keeps me motivated. It pushes me to do what little I can right now. One day I will escape this frustrated feeling... one way or another. Until then these daydreams (and sometimes actual dreams at night) will keep me going. Patience... it will be worth it.