Lung Transplant Clinic – What to Expect at your Appointment
Lung Transplant Clinic – Pre-Transplant Appointment
I visit my Transplant Centre (The Queen Elizabeth Hospital in Birmingham) every three months as I am on the ‘active list’ for lungs. This means at any point I could be called and told they potentially have some lungs that may be suitable for me. I mention the word ‘potentially’ as there are still many reasons why the organs might not be transplanted at this stage. For example, the donor organs not being in a good enough condition or suspected infection in them.
Obviously, during this time of Covid, practices are a little different but with this post, I hope to give an idea of what an appointment is like.
What to expect at an appointment
They call this a ‘tracker visit’ which is essentially what it is. They are not looking at your treatment or medications as this is still done at the hospital you usually attend for your issues. So in my case, my CF team will still be in charge of my care until I have a transplant and then I will be looked after by the transplant centre. I would still need to be under the care of my Cystic Fibrosis team too for general CF-related matters such as diabetes, digestive issues, etc etc.
Lung Failure Clinic
The first few times I went to the clinic it was called the “Lung Failure Clinic”. Not the most appealing name for a hospital clinic. “What are you doing this week mate?” “Not much, thought I’d head down to the Lung Failure Clinic on Tuesday.” “Fair enough, that sounds like a right laugh down there!” I’d prefer a more uplifting clinic name. Anything too saccharine sweet sounds like some American hospital, so the “transforming lives” clinic is out! But perhaps “Lung Upgrade Clinic”, “Lung Enrichment Clinic”, “Lung Renovation Clinic” or do you fancy an appointment at the “Lung Regeneration Clinic”? Hmmm!
Or if you want to focus on the negative aspect, maybe Lung Deterioration? Lung Diminuendo? (I had to find that one in a thesaurus!)
Perhaps not! I’m sure someone out there can come up with a better name! Please leave your suggestions below!
Anyway, this is what happens at a LUNG FAILURE CLINIC APPOINTMENT / LUNG TRANSPLANT TRACKER CLINIC
At my hospital, you are requested to arrive between 8.30 am and 9.30 am. My first tip is to arrive as early as possible, so you have enough time to get to the clinic, visit the toilets and grab yourself a drink. Also, without sounding like your Dad, make sure you leave with enough time – there is nothing more stressful than approaching your hospital on the late side and finding a massive queue of traffic heading into the distance! I’ve found the earlier I arrive, the earlier I go home (obviously!), but the difference can be an extra couple of hours of waiting around.
At the QE, with an early appointment (as the transplant clinics always are), I have never struggled to find a parking space, which is nice compared to some hospitals. There is a car park attached to the main hospital available to use for free for blue badge holders. It is still a considerable walk from the car park to the main entrance and then the clinics and facilities. And this walk can be quite cold, as it seems to be a bit of an urban wind tunnel.
There is a large fruit and veg stall just outside the main entrance to the hospital which is always well-stocked and busy. Whenever I walk past it, I think on the way back I’ll get some bargains…!
Once in the clinic, the first people you see are the Transplant coordinators. Here they catch up on how you have been in the previous three months since they saw you. Number of IVs or hospital admissions, changes in your condition or medication. They ask you about your state of mind and how you are coping with the uncertainty of being on the list.
In addition to the information you give, they do the usual monitoring tests: Height and weight, blood pressure, pulse and oxygen saturations, as well as taking several vials of blood.
Plus they check your contact details and the recipients you are happy to receive organs from. When you first are listed on the ‘active list’ you have to select the categories of people you would be happy to accept organs from. These include, but are not limited to, people over the age of 70, previous smokers, and people who may be considered ‘higher risk’.
After that, you embark on the (dreaded) six-minute walk test.
What can I say about the six-minute walk test? Well, not much really, as the name pretty much sums it up. You walk as far as you can in six minutes and then they record the distance you have gone and your oxygen saturations during it. Usually they have two people walking with you: one to measure the distance and one to watch your sats. I think this has to be the only time I have seen a wheeled metre measuring device* since school (primary school at that!) * I looked up the word for it as I recall it having a different name – click wheel – at school!
Technically you are not meant to talk and conserve your breath, but it breaks up the boredom of the test if you can get one of the people you are walking with to talk even whilst you listen! I had done a six-minute walk test at my CF hospital once and it was horrendous as you had to keep walking up and down these cones only a short distance apart! At least in the hospital you can walk along long corridors. In fact you start off walking down a corridor which is full of beautiful art (I always promise myself I’ll go back and look at them properly one time!), but obviously you can’t stop and admire it! You also have to navigate around various members of staff and visitors, medical equipment, and patients in beds! (Patients in beds being transported somewhere else, not waiting on trolleys to be seen – I hasten to add!)
Clinic X-Ray Time
Usually, at the end of the six-minute walk, they leave you at the entrance to the X-ray department. Just a usual chest X-ray. It makes me laugh when you are collected by a member of staff and they either say “I bet you have had a lot of these in your time!” or they earnestly start describing the action you must undertake before your x-ray.
I have a couple of top tips for x-ray (if I do say so myself!) . Firstly, if you have long hair, make sure you remember to bring something with you to tie it up with. They need your hair out of the way for the x-ray and if you forget one you’ll have to make do with an elastic band. My poor hair is not in the best condition anyway, until alone when a rubber band has been ripped through it! It took me three years of appointments until I remembered to bring one!
Pro tip 2 – if you are wearing Oxygen, they will prioritise you minimising the wait. So if you are on the fence about bringing it, or wearing it when you walk in…. You might decide it’s a good idea!!
Back in the Lung Transplant Clinic
Back at the clinic you then are in for a long weight (usually) to see the doctor or transplant consultant physician. This really isn’t a visit to discuss treatment plans, or medication. It is purely to see how you are, how your lungs are, and how your condition is. Sometimes I have waited for ages to see the doctor and it feels underwhelming when you see them. But the point of the clinic is different from your usual hospital/doctor visits. This is purely an exercise in gathering information from you about your condition and for them to see how you are.
With the doctor, you discuss anything significant, look at the x-ray(s), and then ultimately they decide if they are happy for you to still be on the transplant list. You, of course, have a say on if you wish to be on the list – for example, I asked to come off the list when I first started Kaftrio. They said it was fine either way – whether I wanted to stay listed or take myself off temporarily. If you are very unwell, they may recommend you coming off the list until you are well enough to cope with the operation better. I am fortunate enough to have not been in this position.
I’ve found my appointments with the doctor to be generally much shorter than with my CF doctors. Generally, I am in with them for only 5 to 10 minutes.
Time to Leave – Exhausted
Afterwards, you are free to leave… and must navigate your way back to the car and home. The thought of going to look at the wall of art or visiting the fruit and veg stall is not appealing in the slightest and I just want to get home!
For some reason these appointments make me feel so much more exhausted than visits to my usual hospital. I don’t know if it’s all the moving around the mammoth hospital, or the time waiting around but I come out of there thinking, I’m glad that’s done for the next three months.
Perhaps it feels more ‘clinical’ as we only talk about health, rather than when I see my CF team we start with health and then move onto general chit chat about holidays, TV series, and anything else non-health related.
Or maybe it’s the fact it’s a lot more serious as an appointment – it is about life and death. The people attending the clinic are all very unwell. I went from being one of the poorliest in my CF clinic, to one of the healthiest looking ones at this appointment. I know I look well, but sometimes I think am I too well for a transplant…but then I remember how poorly I can get. It’s a difficult decision to make whether to be listed or not!
After the Appointment
I get home exhausted, wiped out for the rest of the day and often for days afterwards. I try not to have anything I need to do or be at within the same week so I can concentrate on resting afterwards. Those without medical issues might wonder why it is so tiring, but trust me it’s exhausting! It’s not just the physical aspect but the mental side too.
Afterwards, as a follow-up to the appointment, you get a call to say they have discussed your case in the MDT meeting and confirm if they are happy for you to stay on the list (usually whatever you have already discussed with the doctor). In addition, you receive a letter with these details and a date for the next appointment.
For more information about Transplants for Cystic Fibrosis Patients visit the CF Trust or learn more about lung transplants on the NHS website.
I am always happy to chat about any of the issues mentioned here – just drop me a message via Instagram – I promise to reply, unless you are trying to sell me some crap, then I won’t!
One thought on “Lung Transplant Clinic – What to Expect at your Appointment”
Really good read and genuinely funny 😀 a pop down the ‘lung failure clinic’ does sound like a belting day out!
Really good to see you felt like one of the healthier people at the visit vs one of the poorliest, would you attribute that to Kaftrio or just coincidence?
Really informative blog, as a new parent of a CFer my wife and I are just coming to terms with it all, things like this truly help and inspire us. Thank you.