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!!!