Organ Donation Awareness week 2018 — what it feels like to have a transplant.
This blog is a continuation of the FAQ I started yesterday. Yesterday’s were very much intro and facts to the world of the state of play once you’ve had a transplant. This one deals with questions more specific to the actual experience of having a transplant and the immediate recovery, and these answers are more subjective than yesterday. In the future I will do posts about more specific topics. I should point out these are actual questions people have asked me. I’m not just sitting in a room thinking up questions and then answering them… Or am I?… No, no, I’m genuinely not.
I asked friends, family, work colleagues and other randoms what they’d like to know. Some of their questions appear below:
— -
How long did you wait for your transplant? I was on the ‘active’ list for about 7 months. When you are assessed for transplant there are three possible outcomes: The first is that you need a transplant now and you go on to the active list. The second is that you’re not sick enough for a transplant (yet) so you don’t go on to the waiting list. The third is that you need a transplant now but you can’t be listed right away for some reason. In my case it was decided that I needed to be on the list but at that point I wasn’t well enough to get on it. There’s a very fine line between being sick enough to need a transplant and well enough to survive the surgery. My issue was that I didn’t weigh enough and it took three months to pile on the pounds so I could start waiting.
When you got called for your transplant, what actually happens? How fast? Time and speed is incredibly important when you get called for a transplant. For that reason, when an organ becomes available the transplant team typically bring in two potential recipients: the first person is the one they intend to give the organ to, and the second participant is the ‘back-up’. On the day (or night) of surgery, you must go through a battery of tests which essentially assess whether you’re a good match for the organ and whether you’re likely to survive the surgery and recovery. These tests can take several hours, so if it turns out that the first person is too unwell, they need to ensure that the ‘back-up’ is already at the hospital and ready to go. The whole process is fascinatingly efficient — so much so that when I was on the operating table and they’d already started surgery to begin removing my lungs, the new organs hadn’t actually arrived to the hospital yet (kind of scary).
Twelve years ago, they weren’t doing these types of transplants in Ireland, so I attended a hospital in the UK. It meant that when my call came, an ambulance collected me from my house in Dublin, brought me to Dublin airport and my parents and I flew over on a private plane. In my case, I had a phone call on the Saturday afternoon with a view to going into surgery later that night, however a couple of other unusual factors meant that I didn’t actually have my surgery until Sunday morning.
What was the operation like and how long did it last? Well I was asleep for the whole thing but I’m told it went well. Unfortunately my surgery fell on a Sunday and theatre rules meant my parents weren’t allowed come in with me so I had a nice nurse with me to keep me calm. My last memory is of trying to close my eyes and relax. Then many, many hours later (it might have been 12?) I woke up feeling very groggy and like I’d been hit and subsequently flattened by a bus. I was still on a ventilator when I woke up initially and hooked up to so many wires and machines, even had I been able to move, I wouldn’t have been able to. They removed my ventilator (which felt quite claustrophobic) fairly quickly and then it was a case of slowly reaching little goals (like sitting upright, sitting in a chair) all while drugged up to the nines. Delightful. The surgery lasted about 10/10.5 hours.
Was it painful? To be honest, not really, but that’s because I was given an epidural and enough pain relief to fill a sick hospital. I even had a nurse whose title was ‘pain specialist nurse’ and her job was to check in with me at least once a day and review what pain relief I needed. She would use an ice cube to work out what my level of sensation was over my body, what I could feel etc. I don’t know if it’s the epidural or that nerves get tinkered with but initially the whole chest area (back and front) is numb. I remember there were moments of discomfort rather than acute pain. One example is wanting to sleep on my side but not being able to. There were some procedures which weren’t overly pleasant (such as having chest drains removed) but these types of things were like ripping off a plaster — not long lasting and the anticipation was far worse than reality.
What did it physically feel like? The aforementioned ‘pain’ nurse explained to me that a lot of people say it feels like wearing a tight fitting bra, and that those people don’t know whether they simply get used to that sensation or that it goes away. I think that’s accurate but in my experience I’m of the view that it does go away.
Is breathing different? To me it didn’t physically feel different but the side effects of having working lungs are immediate. I actually panicked because prior to my surgery I had imagined I’d wake up and be able to take this gigantic breath of air, but breathing still felt the same as before. What was immediately apparent however, was that I could speak long sentences and wouldn’t need to stop for a gasp. I hadn’t realised that before that point, I would probably draw for air every three to four words (like trying to talk having run a race).
Speaking of les brassieres … what’s the deal there? For the first couple of weeks I just wore pyjamas. In the third week I was getting dressed but would opt for loose fitting clothing (I was also holding a lot of fluid in my body so I looked like the Michelin Man and went up two sizes in clothing but since I had a fairly empty social diary during this time this wasn’t a major issue). I then moved to bras with no under-wiring but by the end of the month I was back to normal bra-wise. To be honest with the whole area where you’ve had surgery being numb for a while this isn’t really an issue.
How long were you in hospital and did you do rehab? Just shy of a month. I was ready to come home after close to three weeks but unfortunately my immune system took an absolute beating after some treatment after two weeks and it wasn’t safe for me to fly back home. No, I didn’t do any formal or structured rehab once I left the hospital. I just tried stuff out and pushed myself gently (going for walks etc). The first three months are the ones where your immune system (and general body) is at its weakest so I wouldn’t have been able to go to a gym even if I’d wanted to.
Do you feel like you’ve recovered from having a transplant or does recovery ever end? This is a super interesting question. Yes I’ve recovered physically from my surgery — it took the best part of a year for everything to settle down. Mentally you go through a huge shift as you have to get used to — and trust — your ‘new’ body. You also need to get used to the idea that you’re no longer a ‘sick person’ which is intangible and a really positive thing but a mental adjustment nevertheless. In lots of ways, that’s something that happens over the course of a few months if not a year too. But after that, because there isn’t a cure at the end, technically that means you’re always in a state between ‘here’s you after straight after surgery’ and ‘bam, that’s all completely done with now’. Would I define that in-between period as ‘recovery’? Probably not because recovery suggests a continual positive incline whereas life is just more stable and my health has plateaued now.
Do you know who your donor was? No. For lots of important reasons, the UK and Irish system operates a donation system that is anonymous. That means there is no direct communication between the recipient and the donor’s family. Which makes all the more incredible that a family would choose to give a stranger the gift of life.
When you feel unwell, at what point do you begin to get concerned? My answer to this is very different now than it would have been 12 years ago. I feel I’m much more in tune with what’s going on with my body now. Things like head colds while potentially quite dangerous are thankfully most often just annoying.There are two things that sound alarms in my head: if I get a temperature that won’t go away (because that means my body is working quite hard to get itself right) and if my lung function drops [more than it should]. So if I’ve got a head cold, I expect my lung function to go down a bit and then recover when I feel better. If it absolutely bottoms out, that’s when I begin to get concerned. The temperature thing I really only took seriously a couple of years ago when I waited it out at home for a couple of days to find out I was actually coming down with pneumonia. The signs I look for which tell me things might genuinely be serious and mean I may be in for a rough storm, are when things like dropping lung function occur with no obvious explanation or symptoms. Thankfully I haven’t encountered that before.
If your transplant fails, can you have another? Second transplants are sometimes possible and much more common in the States than in the UK/Ireland (although anecdotally I see that they’re becoming more common over this side of the pond now). But often the possibility comes down to lots of factors including why the first transplant has failed.
What’s your lung function %? I think it’s in the mid-high 90s of what it’s predicted to be based on my height/weight. A few years ago it was actually wayyyy higher (115%+). For comparison, normal range is anything above 80% and before I had surgery mine was — from memory — 22% — 25%
— -
Thank you for reading this. I will repost another blog from last year in an FAQ style tomorrow but if you have any questions you’re curious about just get in touch (@Or_it_fitz on Twitter).
Transplants save lives. Please talk about Organ Donation with your friends and loved ones, no matter what your wishes are. And remember, if you live in the UK you can sign up to the Organ Donor Register here: https://www.organdonation.nhs.uk/register-to-donate/register-your-details/
