My journey to new lungs and new life

Follow my ongoing journey with new lungs and a new life

Monday, 18 June 2012

What's Happening

Sorry I've been off the radar for the last week, I got home from hospital last Monday, just in time for my birthday on Tuesday :-) I turned 37, which I am not thrilled with, but what can you do? I have been good, I now only have to go to clinic once a week instead of twice a week, which is so exciting for me.

You see, clinic now entails a blood test, an xray and breathing tests, each and every clinic visit, then you see the physiotherapist, dietitian, transplant co-ordinator and then the doctor; its exhausting. The worst bit is the waiting around but everyone is in the same boat so all you can do is re-read the same 7 year old magazines you read 2 days ago. I can now also drive myself, but locally only, not over 80kms. This is in case of a head-on collision at 100kms would do serious damage to my sternum and lungs.

I had a great birthday, I got woken up to beautiful gifts from Brad then he got my breakfast and I went to a family lunch at my aunt's house. In the afternoon I had two friends from work visit me whom I adore and they brought me some gifts that my workmates had put in to buy me. The day was finished off with a quiet dinner at home with Brad and Teddy with the fireplace blazing because it was a freezing cold night. All up it was lovely, I was spoiled rotten, as it should be in my humble opinion!

I had an exciting weekend; I attended my first Toastmasters workshop in around a year. It was so lovely to see old friends and make new ones. I was lucky enough to be invited as a guest on the day by the gracious organiser and I had actually asked for a minute on the agenda to say thank you to everyone for all the support and encouragement they had given me throughout the transplant. Well to my surprise I was allotted 3 minutes on the agenda so what had been a "I'll just say thanks for all your support" thought turned into a Table Topics on the spot! I must have succeeded in getting across my heartfelt thanks because afterwards several people approached me.

Today I brought an overlocker off Ebay. Although its a few years old, its an Elna and works well and I'm really excited but also nervous to use it. It looks very complicated and Brad's mum had one when he was a kid and his only advice was that 'overlocker' must be a German swear word because that's what you do before you throw it out the window because you can't get it working! Great, thanks for that fiancee-o-mine!

Anyhoo, Teddy is well and looking very cute, his curls are coming back and he's looking like my lamby again. Brad has several new clients and I'm powering ahead in my course.

love
K

Friday, 8 June 2012

A Short Story I Wrote

No signs of rejection, yay!

But I am in hospital again with a lower respitory tract infection and I don't feel like talking about myself so I thought I'd post a short story that I wrote a long time ago:

Every Second Sunday – Her Story

Sometimes I wish I never had her... then I wouldn't have to deal with her father.
Every second Sunday is the worst; I have to smile pleasantly while he drops our 5 year old home, both of them happy and exhausted from another fun weekend together! They say that the best form of revenge is success, so I’m a successful single mother, a career woman who owns a lovely home and a late model car, yet all that still doesn’t erase the devastation and humiliation I felt when the love of my life heard our baby’s heart beat for the first time then turned around and walked out of my life for the next two and a half years.
We were both high when we found out that I was pregnant, staring in disbelief at the little pink line on the home pregnancy test gave us the giggles and we stayed in that disbelieving non-reality for the next 3 months, until I finally came down enough to visit my doctor whom was no fool and immediately ordered an ultrasound. The next day we walked into the sterile office, the stenographer throwing us puzzled glances as we giggled our way through the 10 minutes of preparation. He held my hand tightly and kissed my hair as the image of our baby came onto the screen; as the steady beat of our baby’s heart filled the room his grip on my hand loosened until it lay limp on the blanket. I looked up into his handsome face to see a stranger, who was this man staring in disgust at the baby that we had both created? Then he turned around and walked out, simply left, he didn’t even glance back. The rest of the consultation is a blur; by the time I waddled into our flat all his clothes were gone and I did the only thing I knew how: I reached for my saviour and spent the next 3 weeks in sweet oblivion. Eventually my parents intervened and threatened to seek custody of my baby unless I got clean; so immediately after giving birth to my underweight red-faced girl-child, we entered a mother and baby rehab centre.
Is it wrong that everything I have ever done in my life since that humiliating day is geared toward showing him how great I’m doing without him? My degree, my career, my house, all carefully orchestrated for show, none of it fills the chasm in my soul where he used to be. I don’t really think he’s a bad father, since his unexpected contact 2 and a half years ago he has proven himself to be the kind of father that every little girl deserves: patient and caring and fun and loving. So here I sit yet again, a bland smile on my perfectly made up face in my tastefully decorated living room, swallowing the hysteria I always feel inside when near him, craving a hit, craving a high, anything to escape the fact that I still love him.

Every Second Sunday – His Story

Sometimes after I tuck my daughter into bed, I watch her sleeping; I watch her baby chest rising and falling with each breath and listen for her little heartbeat. The heartbeat that scared me shitless when I first heard it, the heartbeat that scared me clean.
I walked out of the doctors’ office that day and ran home, I threw whatever of mine I could into a duffle bag and jumped onto the next bus that was passing. What was I running away from? The woman who was the love of my life? The responsibility of having a child? Or the truth that my child deserved a better father than a junkie like me? I travelled for 3 days straight, sometimes by bus, sometimes hitchhiking, sometimes just walking, deep into the bush. I had heard of a commune started in the 70’s that a mate of mine had gone to live in; the last time we spoke he told me that if I ever got serious about getting clean to come to him and he’d do whatever he could to help. I spent the next 12 months in that bastard of a place; I don’t know which hurt more; being away from her or the physical pain of withdrawal. I lost count of the times I cried myself to sleep, burying my head in the pillow and imagining it was her hair I was kissing again. Finally I felt ready to go back to real life; life on the commune was hard slog but I knew that life in society would be a million times harder.
I had a plan, but I didn’t stick to it, I asked around and found out that she and the baby had moved in with her parents, good solid people with strong moral fibre and no tolerance for bad behaviour. I stood behind a tree across from the house like the coward that I am, hours later I finally saw her emerge, blanketed from the cold by a warm coat and scarf with a students satchel slung across her body. Her mother stood at the front door waving her off holding a baby, I was too far away to see the child clearly, but I swear to God my heart tightened at the first sight of my off-spring. She kissed the baby goodbye then her mum; I could hear the baby gurgle happily. It was another 6 months before I got to hold my daughter for the first time, she claimed that I was an unfit father and incapable of looking after a child however my solicitor proved her wrong and I was granted partial custody.
Three years have passed and I have turned myself into a father that my daughter can be proud of, my house, my career, everything is done with my baby’s best interest at heart. While my life may be going well in that area, it’s not so good in others. Why do I still wake up at night clutching a pillow to my chest and dreaming it’s her that I’m holding? She and I have never spoken about this wall between us; she refuses to utter a word to me that is not connected to our child. I thought that things between us would get easier with time but it is anything but the case. She is like a figure made of glass; cold, brittle, untouchable, unreachable. She thinks I don’t see behind her mask, she thinks I don’t see the contempt in her eyes as she smiles politely at me, she thinks I don’t know that she’s still an addict. I don’t think she knows that I still love her.

Monday, 4 June 2012

The Dreaded R Word.......................

Rejection, the dreaded R word has now entered my world. I went to clinic today and due to some test results my medical team are concerned that I may be rejecting so I'm having another bronc on Wednesday. Yay, not. Rejection. What. A. Scary. Word. I'm terrified and my mind is still processing it so I can't talk about it anymore.

On a lighter note, since I came home I have been struck by how much I let slide for the last couple of years when I got really sick. My whole house is in disarray and my hands are itching to make it right. I started with my jewelry, all of my necklaces were tangled and impossible to see so I went to a fishing supply store and bought these terrific hook and lure organisers. The dividers can be taken out between sections and I have stored all of my necklaces and bracelets in two of these organisers. Pretty neat huh?

Anyhoo, my head is still spinning from the R word, any prayers you can send my way would be much appreciated.

love
K

Friday, 1 June 2012

5 Unexpected Side Affects of Transplant

It will be 4 weeks this Sunday since I received my gift of life and I thought I'd share with you my 5 Unexpected Side Affects of Transplant:

1. Even though I was told it would thin, the skin on my hands has become papery and crepe-like. And when I get my hands just the tiniest bit wet, my fingers and palms go pruney, gross.

2. From when I woke up after the transplant for the next week, my vision was blurred; to the extent that I couldn't read or watch television. That was apparently due to the high doses of steroids I was on and my sight is now back to normal.

3. My sounds have changed. From the way I belch (very lady like I assure you!) to the way I sneeze, it is all different now and I'm still getting used to it.

4. I've been feeling super creative since the transplant, I've been dreaming up paintings I can do, dresses I can make, you name it and I have an urge to make it. Weird.

5. I now sound like a cheap phone sex worker because my vocal chords were damaged a little during surgery. My voice is now raspy and gravelly but it will get back to normal eventually. And yes, that is hysterically funny all those who have suggested that I can now get a second job. Lol.

love
K

Wednesday, 30 May 2012

Just a Thought....................

Yesterday I was reading about Gestalt therapy as part of my counselling course and one line popped off the page into my consciousness: Try it and learn. How simple yet beautiful is that? Instead of the old 'try it and see' where there is a possibility of failure, try it and learn turns the whole thing on its head and opens up a world of possibilities. I believe that we are all on a journey and we are supposed to learn from our failures and successes along the way, so to me 'try it and learn' guarantees me success either way. To me it is a very freeing statement, like the expectation of success or failure are taken off my shoulders and instead I'm calmed and excited by the prospect of learning.

Can you think of ways to apply this to your life?

love
K

Friday, 25 May 2012

I'm Going Home!

Well I got word today that I can go home on Monday and I can't express how excited I am about it. The majority of the swelling has gone throughout my body, so Brad can no longer make funny faces with my fat knees! To 'test the waters' tonight Brad took me out to dinner. It was both scary and exciting but we had a great time eating mexican food. Then to make the night extra special for both of us we called into Brad's mecca, Bunnings, on the way home, lol.

After coming back here to the hospital I was invited to join in some girlie chat with some nurses on night duty here. Boy, I though my switch family and I could educate each other one some new words, but I learned a couple tonight that I will have to share when I get back to work.............lol.

Anyhoo, I'm now officially buggered. I've had 2 hours of physio today and dinner out so it's bed time for me.

love
K

Wednesday, 23 May 2012

14 Days Into My New Life Part 2

Monday14 May 2012 - Today I had a broncoscpy. This is a minor procedure where you are put under twilight sedation and a camera is passed through your mouth into your windpipe and the doctor checks to see how your new lungs are looking. This wasn't a big deal, just yuk because I had to fast from 6.00am that morning and the procedure wasn't until 1.00pm.


Tuesday 15 May 2012 - Today was pretty monumental, I walked outside for the first time in 2 weeks and my physio and I walked approximately 400m in the glorious sun. It was the first time I have been able to walk that far without becoming breathless in years, I was so happy that I cried. It was also huge in that I started wearing my own clothes again. Because I am so wobbly on my feet, it took me 15 minutes to get my hospital gown off and my pyjamas on, but I was determined and I got there in the end! My education as to what my life will now be like as a post-transplant patient started today. Additionally my main wound dressing was taken off. This was weird, I have no other large scars, so seeing my scar for the first time was quite confronting. In the afternoon my body started to retain fluid and I started to swell up all over.


Wednesday 16 May 2012 - Today my left arm started to swell, this is the arm with the picc line in it to deliver iv antibiotics. I had an ultrasound and they found some small clots around the line so the decision was made to remove the picc and put another central line in, which is a drip in my neck. I got my 4 sutures out of the bottom of my wound.


Thursday 17 May 2012 - Today I got the new central line it, its really sore but absolutely necessary.


Friday 18 May 2012 - Today I did 30 minutes on the exercise bike in my room and walked the corridors yet again. I get 2 hours of exercise a day and my physio Matty is terrific. When I first met him I told him that I am super keen and super motivated but I don't respond to yelling. He replied that that's ok, he's not much of a yeller anyway so we'll get on just fine. I was so relieved to hear this. The last thing I need is a drill Sergeant for a physio. I am so swollen all over, my belly is huge and covered in spots from the anti-blood clotting injections and insulin I have been taking.


Saturday 19 May 2012 - Today I did something pretty huge. Before you can be released from hospital after transplant you have to walk up the hill from the main entrance to the hospital up to the main building. This is a hoo-er of a hill and challenges the even the fittest. And I did it with Matty pushing my iv drip pole the whole way. I am really proud of this. My diet will adjust hugely and I can no longer eat any deli meat at all. Brad bought an assortment of sandwich meats for me to try :-)


Sunday 20 May 2012 - Today was pretty quiet with lots of reflection. I got new lungs 2 weeks ago today. What's in store for me next?


love
K