Waiting for a Transplant – FAQ

Before Christmas I had been contacted by the NHS Blood and Transplant Press Office to see if I was willing to share my story. They asked me some questions about what it was like waiting for a transplant, how my life was impacted and my hopes for the future. I thought it was worth sharing the questions and answers here.

What is it like waiting for a lung transplant? 

Man waiting for a lung transplant on a bench
Waiting for a lung transplant is an arduous task, although this image might suggest otherwise!

When you first go on the transplant list, it is an extremely scary time. You have essentially been told that they have run out of options for you, and that your only chance of having a future is by receiving a transplant. It is difficult to process and know that in the next few years you’re either going to die, or you’re going to receive a transplant. Both quite large events!

You literally have no idea when this is going to happen. Or if it going to happen. You have to keep your phone on you at all times. I need to make sure I am always within a certain drive of the hospital. I try not to think about it too much as it will drive you mad, but there are certain times when I always think about it – every night when I go to bed, I make sure my phone isn’t on silent and I think maybe tonight is the night. 

How long have you been waiting for a transplant? 

Since May 2017, so two and a half years, for a double lung transplant. 

How does it impact your day-to-day life?

I try to forget that I am on the transplant list most of the time, although it is always in the back of my mind. My health is impacted hugely by breathlessness and fatigue caused by my failing lungs (I have Cystic Fibrosis), so I am not able to do much day-to-day. I used to live a relatively full and independent life until my health took a big decline. Now my whole day is spent trying to keep well enough for a transplant – nebulisers seven times a day, physiotherapy, regular intravenous antibiotics, etc. I take over 25 different medications so even getting through these is hard work!

Simple tasks leave me breathless – for example I need to sit down when I brush my teeth as I get out of breath. I have a carer who helps around the house in cleaning and preparing food.

It is difficult to make plans as I don’t know whether I will be well enough to attend things, or if I even will be here. Things like buying tickets to see a gig or a show – the chances are I won’t be well enough or will be in hospital makes any planning very difficult. One of my friends has just moved to California indefinitely. When I said goodbye to her it struck me I may not ever see her again. She is coming back for her wedding in 2021 but obviously this is some time away and I may have died whilst waiting before organs became available. I try to take things on a day-by-day basis rather than making any long term plans. There is no room for anything impulsive!

How did your health impact Christmas last year? What is Christmas waiting for a transplant like?

Christmas Day in Hospital 

I was really looking forward to Christmas last year as my partner and I were going up to see my brother and his family in Manchester. I have two young nephews so was looking forward to seeing their excitement at Christmas. Unfortunately I was pretty ill last year and spent five weeks in hospital. All over the build-up to Christmas, Christmas Day, Boxing Day and the New Year in hospital. It was upsetting as my partner works quite long hours but had the time between Christmas and New Year off so we couldn’t enjoy that time together. I had visitors over the Christmas period at hospital but was too tired to see them for more than an hour or so.

Christmas on the transplant list is an uncertain time. As there are more colds and viruses around I am much more likely to be unwell anyway.   Christmas and New Year always makes me reflective and makes me think about the future and the possibility of getting a transplant in the next year or if it will be the last Christmas I see.

What will Christmas be like this year?

 I really don’t know what Christmas will be like this year. It is so disappointing to make plans and then not be able to go as I’m not well enough. 

One of my close friends is getting married in December. I am focusing on this date, and trying to keep well enough to go. I will be so disappointed if I am too ill to go. Realistically know I won’t be able to stay a long time, or be able to dance (or drink) but I just want to attend!

~ Update – I managed to go to my friend’s wedding – I was on ivs and had a sinus infection, but I managed surprisingly well.

What are you most looking forward to about Christmas? What is your favourite thing about Christmas? 

My favourite thing about Christmas is spending time with my loved ones. And seeing all the pretty decorations.  Oh, and the copious amounts of food.

What difference would a transplant make to your life? What difference would it make to Christmas?

I can’t even imagine what a difference a transplant would make. Hopefully, I would have a life rather than going from one medication to the next treatment. Making plans with friends and family rather than a string of hospital dates. 

Being the fun Auntie rather than the poorly Auntie who needs to go and sleep. I could run with my nephews and nieces rather than watching them from my mobility scooter

Making long-term plans for the future rather than living day-to-day.

Life after transplant
Life after transplant might look like this, but unlikely to unless I move to another country!

I dream of having the energy to stay awake through a whole day instead of scheduling in rest breaks. Being able to breathe on my own, rather than relying on a machine (NIV) to do it for me!

I would like to be able to go to a gig again and dance and sing throughout it, rather than sitting through it. To spend my day thinking about work rather than plucking up the courage to write my will and thinking about the songs I’d like at my funeral. 

What would you be able to do that you can’t now?

So many things! I’d like to go to a festival again, run, go back to work, maybe even attend a zumba class!  

What would you think of your organ donor?

Hands holding a heartI would have indescribable gratitude to them and their family. They would be my heroes. Knowing I had been given another chance at life when someone had lost theirs, well what can you say? I would carry them with me and try to make the most of the chance I had been given.

What are your hopes for 2020? Have you got things you’d like to do when you get your transplant? 

I obviously hope to get a transplant in 2020. Realistically know that due to the shortage of organs, that this very well might not happen. So I hope I will stay well enough to be able to stay on the list. (If you become too unwell you cannot have a transplant as you are unlikely to survive the operation and recovery). 

With the law on consent changing in 2020, I hope this increases the chance of me getting an organ. The most important thing is to make sure your loved ones know your wishes regarding organ donation. Please have a conversation with them, so they know what to do should the worst happen to you.