Jo is currently teaching introductory classes of Tai Chi in Bayswater and attends Edith Cowan University to finish off a Graduate Diploma in Secondary Education. She is the eldest of four and the only one with cystic fibrosis. She writes stories and poetry in her spare time and loves to garden, even though it’s not exactly an ideal pastime for a transplant recipient. She owes her good health to her mother, who made her swim relentlessly when she was growing up.
At what age did you get your transplant?
I was 47 years old when I got my transplant in 2015.
What sorts of things did they assess you for to get onto the waitlist for transplant?
There are a range of tests and procedures that help the Advanced Lung Disease (ALD) Team at Fiona Stanley Hospital assess you for transplant. You don’t have to be in perfect health, obviously, but they have to make sure that the transplant won’t a) make you worse, and b) that you are prepared for the responsibility of caring for your new lungs. These are really tough things to try and measure so there are a lot of tests and it can seem to take forever. But the tests are your best chance of enjoying longevity of life as a transplant recipient.
My tests started with an interview with one of the three consultants on the ALD team, Jeremy Wrobel, and I met the Transplant Co-Ordinator, Sharon Lawrence. I was a bit anxious about my first meeting, I was hospitalised at the time and moving around was very difficult. I was badly underweight and exhausted and I suspected I was dangerously close to being too sick for a transplant. I also had CF liver disease and knew that would be an impediment to getting a transplant. I was dreading this appointment. So I took my sister, Christine, and this was a great idea as the amount of information the team offers is absolutely breathtaking. Chris was able to remember things that I’d forgotten and she also asked questions I hadn’t thought to ask. By the end of the appointment the three of us were able to share a little laugh and a smile and that helped.
It’s important to realise that the team are being very cautious with you on an emotional/psychological level. They need to be able to discuss the possibility of a transplant but at the same time, they have to be careful not to offer false hope. They need to impress upon you the extensive commitment involved in being a bilateral lung transplant recipient. It’s also a good idea to put your best self forward but be honest. Over my 40+ years of having CF I have met some Doctor’s who have been utterly repugnant human beings. This has made me wary of new doctors and sometimes I can be rude and unresponsive in that first meeting. I made myself be polite and friendly, charming and attentive. Luckily, Chris was very pleasant with Jeremy and I think he liked her. That helped.
What was the decision making process around getting a transplant?
There were a few major decisions. First, my Doctor (Siobhain Mulrennan) makes the decision to refer me to the transplant team. This decision was actually brought up several times in the lead up to finally being a transplant recipient. Though my lung function was quite poor, my health was in a plateau. I felt I was somewhat stable and while stable, I didn’t want the added stress of adhering to a pre-transplant regime.
Secondly, you decide that life with advanced lung disease is untenable. This decision varies from person to person and that can be confusing. Generally, when your FEV-1 is at 30-40% of the predicted mean, it is probably time to look at transplant options. But also look at your quality of life. Ask yourself some difficult questions, like: When was the last time I looked forward to going out at night with friends? Am I enjoying eating? Am I making new friends or is that just too tiring? It might be the case that you have a good quality of life but your lung function is very poor. This can be difficult as you seem fine but if you came down with a nasty virus you could become dangerously ill. The decision to “go for it” is probably the biggest decision you’ll ever make but it is important you make it one way or the other. You don’t want to be struggling for breath before you decide to meet the transplant team.
What happened when you were on the list for transplant? E.g. did you have to work really hard to go to physio and attend appointments?
People always talk about “lists” for transplants as if there are queues and when it’s your turn, boom, transplant time. Someone told me it’s more like a pool and all the people eligible for a transplant (you’ve met the team, you’ve had the tests at FSH, you’ve talked to your family and organised your support team) are swimming in the pool like human shaped fish. Some lungs are donated. Then the team considers ALL the potential recipients in the pool, even if you were only accepted the day before, and tries to find the best match possible. They do this by looking at several things, like blood type and the size of the lungs. They also consider the health of each “fish”. So your lung transplant can happen any day once you have been accepted into the pool.
This can be a really difficult time, a really anxious time. And you have your regular CF appointments to attend as well as your regular ALD appointments at Fiona Stanley. You’ll be encouraged to exercise as people who exercise are fitter and stronger. It doesn’t have to be a marathon but if you can manage about 20 minutes each day, that will go a long way in helping you recover from surgery. Your physiotherapist will probably have some suggestions regarding exercises to help you maintain some of your muscle strength. I spent the eight weeks before my transplant in hospital at SCGH. I was too sick to leave and for a long time I was too sick to even walk. I had to be fed via a nasogastric tube as I couldn’t swallow properly. I was on non-invasive ventilation almost all the time and only came off occasionally to have a cup of tea or a lemonade, a juice or milkshake. It was terribly hard work and then I had to exercise as well. Fortunately, the ward at SCGH, G54, had just acquired a portable NIV (or bi-pap) and I used that to exercise. No matter what your pre-transplant regimen is, most of it is hard work but I guarantee it will be worth it.
Did you have to wait long when you were listed for transplant?
I did not wait long for my transplant. The work-up (the pre transplant testing and so on) took time but once I was in the pool, I only waited about 6 weeks. There are people who have waited for over a year and people who have waited less than a day. There is no way of knowing how long you’ll wait. If you are the type of person who thinks meditation might help, then do that. Go to a class and learn. I learnt tai chi and in the year or two before my transplant, one of the instructors decided to start a special class for people with health problems. I was their first student. And it was extremely soothing and it helped me to relax.
What sorts of changes happened to your body after transplant?
Be prepared for your body to change – a lot. At first a lot of the changes are to do with the surgery. Your chest will be both tender and a bit numb for months and months after your transplant. My liver and kidneys had a lot of difficulty coping with the intense medication administered immediately after transplant. I was still very thin but my body swelled and became very painful in the abdominal area. I had four drains coming out of both sides of my chest and a catheter. I felt as if someone had beaten the stuffing out of me. Every time I tried to move, the tubes attached to me pulled and it felt as if the scar was being ripped apart. Eventually everything settles down and you start to enjoy breathing.
Breathing with non-CF lungs is absolutely amazing. I must have used that word (“amazing”) hundreds of times a day. I would occupy myself breathing in and out, in and out. Then I would hold my breath and count how long I could last. I kept staring at the monitor that recorded my oxygen saturation (98-100%) and my heart rate. I could not believe how good the scores were and I took a picture with my iPhone. I coughed and a tiny bit of mucous came out but it was so light I remember thinking it was like silver. Long term body changes include putting on lots of weight and, for some people, significant water retention. Be prepared for your body to change because now you can breathe, your body will have more energy and you will need to fuel it properly (no more chips and coke diet for e.g.). It is all worth it even though, at times, you feel strange.
Some people report weird dreams or other strange experiences e.g. suddenly liking beer did anything like this happen to you?
During my time at FSH I had several hallucinations but they were fairly manageable and did not bother me that much. I also had vivid dreams and would often tell people strange stories about what I had done “the other day” and half way through the story I would realise that I was talking about a dream or a confused long-ago-lived event. I know of people whose hallucinations can turn into scary or frustrating events in their minds. Some patients, while in ICU, think their nurse is trying to kill them or hurt them.
Luckily I did not experience these kind of scary hallucinations or paranoid delusions. I don’t think I inherited any likes or dislikes from my donor via their lungs. It’s hard to tell. Most of the time I’m discovering the things I used to like doing and, it seems, I still do. I did wonder, however, how my lungs voted in the last federal election when it was time to vote early July. I wondered which party my lungs voted for. But most of the time I have had an overwhelming sense of these lungs being my lungs, the lungs I was meant to have and the lungs I finally believe I deserve. I often think about the donor and their family, but I can’t say I feel as if I inherited any personal traits from him/her.
There is some evidence that people experience some trauma after coming out of ICU after the transplant, do you remember anything about this?
Transplant surgery is serious surgery. It can take around six hours to complete and when you wake up you are pretty sore. Bad dreams, hallucinations, crying fits and feeling unworthy – they are all part of the process. My “trauma” was mostly centred around the time before my transplant so I probably didn’t feel the trauma from the transplant as much as I could have. But many do. Because of this, the ALD team has a psychologist you can talk to, a social worker and/or many of the nurses have seen many, many transplant recipients go through exactly the same thing. The best thing to do is talk about it.
Where are you now in terms of your health and outlook on life?
My transplant was approximately 11 months ago. During that time, I’ve watched others have their transplants and are going back to work or going on holidays. I hadn’t worked or studied (I had started writing a thesis at university about 8 years ago but had to stop as I became more unwell) for a long time and I don’t know if the plans I had 10 years ago are the plans I want to resume. I have become more involved with the tai chi society of which I’m a member and I recently became (re) accredited as a “beginners'” instructor (kind of like a junior instructor). Resuming interests and past-times I haven’t been able to do for many years has been one of the best things about the transplant. I’ve also had to work on developing social skills as I had become very socially isolated and used to spending a lot of time by myself. I’ve been very lucky that many of my friends have patiently been waiting for me to get better and are happy to just pick up friendships where we left off. So I’m still working on where I’m at with my recovery but each week I look at what happened during the week and how things are improving.
Where are you now in terms of your health and outlook on life?
Future plans. I have a million of them. Initially my main plan was to cook myself a meal I actually looked forward to eating – as we all know, hospital food smells like feet and tastes like vomit. I wanted a steak and some rice salad. It was delicious! Some of my plans seemed normal: like returning to university and studying teaching or social science or perhaps doing a creative writing PhD. Some of my plans are probably not incredibly realistic: become stars in a reality show with Holly (also a transplant recipient) about our adventures as CF/transplant women with attitude. Last week my plan was to make a living knitting dog jackets. This week I’m thinking of going back to writing so the PhD option is coming back into my plans again. Like I said, every day I have a new plan and sometimes I think I’m just in love with being able to make plans because I couldn’t before my transplant.
What words of wisdom can you offer other people considering transplant?
I guess if I have to come up with something it would be this: having a transplant is one of the hardest and most amazing things you’ll ever do. So take as many pictures as possible, make your family and friends video you – even if you don’t feel like it. If you’re into writing, write stuff down (you and your family and friends will laugh and laugh about it later). Also – transplant meds take a bit of getting used to so you might need to enlist a “drugs buddy” to help you remember to take everything. I was really surprised by how confused I was with all the different meds until I realized that some of the meds have side effects that fuzzy up your thinking a bit. You’ll get used to it just as you are used to your CF meds.
The other piece of “wisdom” is simply this: take your time. Transplants in general, take about a year from which to recover. Bilateral lung transplants are no different and may take a little longer depending on your circumstances. So be patient. Every day people will tell you how well you look and some days you may feel dreadful and wonder what it is they are seeing or why your exterior isn’t matching your interior. Other days you will feel so excited and grateful to be alive, you’ll want to take on the world. A (not too old) friend whose transplant took place over east in the 90s told me the first year is like a roller coaster and I guess she wasn’t wrong. For me, this transplant reminded me how precious everything is and how lucky we are to be here. I know some people curse CF and all of its debilitating symptoms and I guess I have also. But I also know that without my CF genes I wouldn’t be me, I wouldn’t have had some truly awesome people in my life and I wouldn’t have had this transplant.
Interview from our Transplant Positive Profiles book.