health

"How a double lung transplant saved my life and changed my outlook."

Image: Wendy Jenkins.

In 2003 I had a couple of health issues that made me believe something wasn’t quite right. I was on Weight Watchers and had lost 10 kilograms but found I was getting more tired the more I lost weight. Eventually I was puffing just walking to the letterbox.

Then one night after staying late at work the lifts to the carpark were broken so I walked up the ramp instead.

The next thing I knew I’d woken up on the ground behind the car with blood in my mouth. At first I thought I’d been mugged but then worked out I’d fainted and fallen alongside the car hitting my head on the concrete. The next day I booked an appointment with my GP who decided to get me seen by some other specialists including heart, cancer and blood specialists.

The specialist appointments happened within a few weeks and next thing I knew I was at The Alfred respiratory department being told that I had a rare condition called Primary Pulmonary Hypertension and probably had no more than 18-24 months to live unless I had a double-lung transplant. Gordon [my husband] and I burst into tears at that point. (Post continues after gallery.)

Essentially it meant the arteries between my heart and lungs were not allowing the blood to flow properly putting very high pressure on my heart. It didn’t feel real.

I was then put on the transplant list and told the average wait for lungs at the time was 13 months. I ended up waiting 22 months. While on the waiting list, we could only travel within a two hour radius of home and I had a bag packed at all times in case some lungs became available. I also had to have my mobile phone on at all times.

When the call finally came it was at 2am. I’d gone out to dinner the night before and had a couple of glasses of wine, something I rarely did given my medications. My husband took the call and I knew straight away it was the hospital. When I arrived they went through what was going to happen but it was all a bit of a blur.

Wendy with husband Gordon. Image: supplied.

 

I waited in the ward until they were ready for me and hugged my immediate family who were there. My husband then came down with me to the prep room as only one person is allowed. I was joking around that they could feel free to do a tummy tuck while I was under and then I was asleep.

After surgery I was in ICU for two weeks during Christmas and New Year, which is a lot longer than most transplant patients I've since discovered. My vocal chords had been really damaged and so I couldn't speak and for a long time they thought I may only ever be able to whisper.

I was in the specialist respiratory ward for another four weeks, again longer than normal, and I felt quite depressed because I felt I was not recovering as well as the other patients. I slowly learnt how to sit again, walk and push myself up from the toilet. I also learnt how to swallow again and I cannot explain how amazing the first glass of cold water felt after several weeks.

Wendy was in the specialist respiratory ward for another four weeks. Image via iStock.

 

The first year I was in and out of hospital with a variety of complications and got quite depressed. I remember lying in bed thinking I could just swallow a bunch of pills and then it would all be over but I was too tired to do anything about it. I had severe depression as a result of the recovery effort, not being able to have children and the short life expectancy, with lungs at the time lasting on average only five years.

Receiving a transplant is amazing however, to be honest, I had mixed emotions for sometime. I didn't want to tell anyone in case they thought I was ungrateful which was definitely not the case. Since speaking to other transplant patients I've found that this is very common and most of us hide how we really feel which I think is very unhealthy mentally.

I have seen a psychologist regularly since I've had my transplant working with a variety of behavioural therapies and feel a lot more positive nowadays. Many patients can't afford such level of care so I know I'm lucky. I also ended up regaining the use of my voice which was a big relief and surprise. While I'm still on around 54 per cent lung capacity I'm not planning on running a marathon so can happily do most things. (Post continues after gallery)

I do know a little about who my donated lungs came from - she was older than me and very loved by her family and community. I have written a couple of times to the family which gets coordinated via the hospital to ensure privacy at both ends and it was great to know that they can have something positive come out of a tragedy.

My daily care includes taking lots of tablets; currently 29 a day. I'm also very mindful of keeping well so I rest whenever I need to and avoid sick people where possible. I also have a large stock of antibacterial soaps and sprays on hand especially useful when travelling on public transport which I try to avoid in peak hours.

I think I can read my body really well now so will act on anything out of the norm quickly instead of waiting to see what happens. This has saved me from a few more serious complications over the years.

As well as literally keeping me alive, my transplant has pushed me to do things I might have taken many more years to do. I don't put things on hold anymore and strive to chase my dreams now. I don't even delay the small things - if you say to me "let's catch-up sometime" I don't respond with the usual "yes, that would be good" - I've got my diary out to set a date then and there.

"I don't put things on hold anymore". Image: supplied.

 

Despite a rocky start emotionally, I now feel more confident that I will live longer than first planned with my ninth anniversary this December. I even told the doctors this year that I was going to live until I was at least 85 years old. To their credit they didn't say that's impossible, so who knows? Someone has to live the longest so why not me?

I'm also working on a bucket list. So far I've swum with dolphins, given a cheetah a head rub, shot a gun, set-up my own business, increased the charity work I do, caught up much more with family and friends, and travelled more both locally and overseas including dining in some amazing restaurants. Next on the list is a helicopter ride over the Great Barrier Reef and dancing lessons with my husband.

Wendy and husband Gordon now currently co-chair the fundraising committee for The Margaret Pratt Heart Lung Transplant Foundation (MPF) which was founded by three times lung transplant recipient Margaret Pratt and her husband Tony. The focus is on funding transplant research at The Alfred that seeks to improve the outcomes for children and adults post transplant by reducing chronic rejection rates. The MPF is staffed entirely by a small group of volunteers and to date has raised over $1.2 million. For more information visit the website.

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