4 years since the second transplant!

The 31st of October marked 4 years with my second set of gifted lungs!!!! Time has flown SO MUCH! It's unreal. I thought it's time to update the blog a bit. 

So health wise everything is good! So far I've still had NO ISSUES with these second lungs. They are beautiful and I love them. I had an outstanding check-up last week. My blood results were all normal, and my kidneys are doing better than they have in years. Not that my kidneys are bad, but 14 years of immunosuppression does take it's toll. 

Something that's big for me though... as that as of yesterday, all my immune suppression has been changed... the reason for this is my history with the hysterectomy and abnormal cervical/vaginal cells. So one specific medication, Everolimus or Certican, has the "side-effect" of being very good from a cancer perspective. As well as suppressing your immune system for transplant purposes. So my dose of Certican has been pushed right up, and my Cellcept has come down from 1250mg twice a day, to 500mg twice a day. Neural has halved, from 50mg twice a day to 25mg only. Prednisone stays at 7.5mg. These massive changes make me very nervous! However I've had big changes in the past and my lungs were fine. So I just have to trust that they will be fine now too.

I didn't go big with celebrating this year's lungaversary, but next year will have to be an epic one... 5 years is a milestone! 

In very exciting news... On Sunday I'm off to Mauritius with a friend from school! Carli! We booked the tickets in August already, hoping the Covid won't spoil our plans, and it seems like things have worked out for us! Soooooo excited. We're not staying in a resort, will be doing our own thing. Will post pictures!

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. 

Third Wave, Pandemic Anxiety, Surgeries on Tuesday.

 So Pandemic shit got real these past few weeks. Especially here in Gauteng. It feels like EVERYONE is just getting sick. Everyday more people that I know have Covid. This past week three SATSA members (Transplant Sport) passed away. Two were transplant recipients and one was the husband of a heart transplant recipient. It's bizarre.... how people are desperately asking me if I know where you can get oxygen on the "black market" (no I don't), and asking me all sorts of lung related questions, because I'm an expert in that area. Also - suddenly everyone knows what a pulse oximeter is. WTF... how times have changed. I bought mine on Amazon in California in 2015, because they were much more affordable than the ones available for sale here in SA. Now every second person has one. Hearing people with Covid talking about their O2 sats has made me test mine again! At least all is still good in that area... tested it yesterday while cleaning my flat. 

I've been self isolating since Tuesday... because I'm having a whole bunch of scopes and biopsies done this coming Tuesday. They are as follows:

Colonoscopy and Anoscopy - because I'm over 30 and have CF and have been on immune suppressants for almost 14 years. So that ups my risk for colon cancer. Joy... 

Tongue examination under anesthetic and biopsy - because I have a funny spot on my tongue, that has really confused my lung specialist as well as a head and neck surgeon... they both have no idea what it is, so they want to check it out while I'm out, and then probably cut the whole thing out and send for biopsy. 

Vaginoscopy - with my hysterectomy last year in November, they didn't get clear margins when they cut out my cervix. So there was still some medium grade abnormal cells left. They've been treated, so it's time to see if it worked.... very very nervous for this one. 

As you can see, Tuesday and Monday will not be fun. I just want to get it over with. Every orifice will be examined by 3 surgeons... kudo's to them for organising it so well though. I much prefer one insane day like that than 3 admissions, especially in a pandemic. I had my 13th Covid swab done today, and luckily it was negative as expected. All of this will take place at Donald Gordon medical centre. 

PLEASE NOTE: these types of procedures are all part of being a transplant recipient, especially as time passes after your transplant. There is a lot of stuff that need to be checked out ALL THE TIME. It doesn't mean I'm not doing well, or that I'm sick (I'm really in better shape than ever), it's just managing the side effects of taking 4 immuno-suppressants. And 30 years of cortisone use. All the things that have kept me alive. Fingers crossed that all the results are good!

Blogging on the Backburner

As you may have noticed, I hardly ever blog anymore. Life's pretty busy, but I do post on Instagram and Facebook a fair bit! So if you'd like to keep up with my journey with these second set of transplanted lungs on a more regular basis, follow me on either one of those 2 platforms. If there is big news, I'll share it here!

Also, today marks 3 years and 5 months with the new new lungs, yay!

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.