Tuesday, March 19, 2013

A little bit about the transplant


Gorgeous gift from Janine at Middlemost

I don't want to bore crafty peeps with lots of medical info, but I've been asked lots of questions about the transplant, so I thought I'd answer them here for anyone who may be curious.


I have what's known as a clamshell incision. It's a cut from side to side under the breasts. There's also a cut through my sternum, which has been wired closed with a box like structure, and four smaller incisions where the drainage tubes were placed. Everything is healing up nicely.

The first three months is dedicated to recovery and rehabilitation. I have to attend the hospital every Monday, Wednesday and Friday. I have gym three days a week, plus dressing changes, blood tests, education sessions and clinic on those days. Extra tests are booked around this, so this week it's lung function tests, BIPAP clinic, a chest ultrasound, and just to top it off - a bronchoscopy.

I have some damage to my diaphragm which means that I can't yet get air into the bottom of my lungs. It also means that I can't lie down without using a BIPAP machine. This may take a year to resolve itself, so I'll need to use BIPAP at night until then.

The transplant has given me what's known as 'steroid induced' diabetes.


There are a LOT of meds to take.... morning and night. I also have to check my weight, temperature, and peak flow daily.

All of this is hard work (I need an excel spreadsheet to keep track of everything), but I wouldn't change it for the world.

Check out the cankles!
 
I'm seriously amazed that I'm able to do normal everyday things. I can't even explain the elation I felt at being able to walk up a small hill for the first time!

I still do strange things like looking around for my oxygen tubing so I don't get tangled up.... and then I realise that there is NO oxygen tubing.

I feel so free without it. I can get out of the car and walk straight into the shops without having to lug about an oxygen trolley. I don't have to worry about how much oxygen I've used towards my monthly quota. People are not staring at me anymore, or tripping over my trolley, or asking me akward questions at the supermarket checkout. I'm still not used to it.

I've rediscovered singing. Before the transplant, I couldn't sing along to the radio or iPod as I didn't have enough breath. Now I can sing along (even if I'm tone deaf). I apologise to anyone within earshot when an INXS song comes on the radio.

I've been told by nearly everyone I've spoken to so far that they didn't realise that I talked so much. Apparently now you can't shut me up! It was just that beforehand, I didn't have enough energy or oxygen to breathe and talk at the same time.

My phyisotherapist tells me it takes six weeks to break a habit - in her case, she's trying to teach me to breathe normally (rather than the shoulders forward puffing type of breathing that I'm used to), so that's my challenge for the moment.



I'm looking forward to getting fitter and fitter and eventually buying myself a new bike. Michelle, Angie and Brianna have made sure that my new bike will be totally pimped up (yes check out the spokie dokies) and ready to roll. That's going to be my reward once all of the rehab is finished.

That's all I can think of for now. If you have any questions, ask away!

40 comments:

willywagtail said...

Thanks for sharing Cam. I'll watch out for INXS singers if I'm ever in Melbourne. Cherrie

simplestitches said...

hey Cam, so glad you are on the road to recovery! and discovering the "new" you along the way...take care and hope that reward comes along very soon!

Melissa Gaggiano said...

Yay Cam!

Kate said...

Amazing! Amazing! AMAZING!!
So thrilled for you and your family Cam.
You are a star. xx

Cass said...

Cam that is just the best news and I am so happy for you. Can't wait to catch up next time I make it down there

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...

i have tears of joy in my eyes reading this! Such a wonderful thing for a wonderful person!

Miss Prudence said...
This comment has been removed by the author.
Miss Prudence said...

OH MY loRD!!!I am so sorry for that Cam - ooops, it wouldn't publish, or so I thought....take it as an indication of my joy for you!

Amanda said...

Glad you are rediscovering all the things that we all take for granted.

Lexi:: PottyMouthMama said...

Cam I am so so thrilled for you.

This is such a great post.

May you continue to get stronger and stronger. You are AWESOME.

Lots of love, xxx

Linda said...

I am so happy for you Cam and your progress is amazing!!!! I have been following along the whole time and want to send you lots of hugs for bravery!!! xxxxx

Carly Findlay said...

What an amazing achievement. I can't wait to sing along with you :)

Tracy VT said...

Wow! And so soon back on the road! Love the pimped bike. Sing those songs loud and with joy!....afterall it's "what you need"...(bad INXS pun!)
Tracy x

909f772a-9087-11e2-ad4e-000bcdcb2996 said...

Also. They're called spokie dokes. GOSH.

Stomper Girl said...

I am so happy for you Cam. Hearing you describe the change to your whole being is a bit mind-blowing actually and a beautiful thing. Will the diabetes go away?

bec said...

Ha, I heard you singing along to the ipod the weekend I was there- we were prob both too self conscious to sing out loud haha. I didnt realise you hadnt for ages! I would have sung louder to push you along haha

Kate said...

You are amazing, keep up the good work :-)

Carmel Morris said...

I am so happy that you can sing and talk and don't have to cart around your oxygen tank (or worry about your oxygen allowance - sheesh!). We will all be able to see you coming when you get on that bike!

Miss said...

Marvellous news. So good that you are rediscovering singing, hills, and unencumbered general getting about. Hope there are many more good things to come.

Thanks for sharing a bit about it. I wouldn't have dreamed of asking, but am interested. Excel spreadsheet is a great idea!

Well done. Cheering you on and also praying for you (hope that's OK with you).

Jennifer Rose Phillip said...

i find the whole procedure fascinating, it goes to show what modern medicine is capable of :)

enjoy your bike when you get it :D

Vireya said...

Thanks for explaining all that, Cam. There's always things everyone is curious about but too polite to ask.

So fantastic to hear about your progress! I want to say, "Sing your lungs out!" but maybe that's a bit tasteless in the circumstances...

Leonie said...

It's times like this that you have to marvel at how far some aspects of medicine have come. What you are recovering from is nothing short of miraculous and to hear you are already getting out and about and not needing the oxygen is simply stunning! I'm so so so very pleased for you and hope the rest of your recovery continues to bring you new frontiers that you can cross and put behind you and you can see that milestone and enjoy your progress. Gosh it's just amazing really :-)

Jody Pearl said...

You're looking and sounding better and better all the time - you'll here the cheering from here when there's a photo of you n a bike! x

Tas said...

An interesting read and an inspiring read.

You remind me to appreciate the things that I take for granted every day.

Can't wait to see you and your blinged up bike ;)

Marg said...

I'm so happy for you that you are already noticing such a great improvement. Doing a happy dance here for you. No singing though!

Bron said...

That is huge...so much going on for you to keep being well. I love your reward and I am sure you will obtain it before you know it. xxx

Selina said...

So happy for you Cam, you have no idea! I would love to know what your lung function is now. I assume it's probably not as good as it possibly would be because of your air entry in your lower lobes, but still, I bet it's pretty good! xx

Cat from Raspberry Rainbow said...

Wow Cam. Wow is about all I can say. But such a happy wow. You will be riding around on your own bike soon, spokey dokies and all :)

teddybearswednesday said...

FIrstly thanks Cam for sharing more details about the transplant itself, and the process of recovering from here.
And secondly, i'm so so happy for you I can't wipe the smile off my face and the tears of happiness from my eyes.
I can't wait to see you on that bike ! xo

cat and vee xoxo said...

thank you so much for sharing all of this Cam, it's so kind, generous and thoughtful of you. I was just thinking about you - I've just finished the very excellent novel 'The Fault in our Stars' by John Green. The main character has a BiPap machine at night, and an oxygen trolley during the day. Her oxygen is a constant reference point in the book, so I did keep thinking of you as I was reading it! (though her reason for needing oxygen is totally different from yours).

You have so much happening right now - I'd need an excel spreadsheet too!. Here's to singing loud to INXS, and talking a LOT. And to the magical clinking of spokie dokies as you ride your bike around after rehab. How very awesome. take care, Catherine

Jay @ Finki said...

Geez it's such a big procedure isn't it. Mentally and physically exhausting. But a different type of exhaustion compared to life before your op. The type that is only going to ease daily as you mend and learn how to use those new lungs. Keep your chin up Cam whilst your life finds it's rhythm again. xx

Cakelaw said...

A great story - so glad that you have some freedom back. Best wishes for your recovery.