By Adrian Duncan
Introduction
My name is Adrian Duncan, and I had a double-lung transplant just over a year ago at the Queen Elizabeth Hospital in Birmingham. My CF care is at the Heartlands Hospital, also in Birmingham.
I want to stress, that this is my story. My story will be different to yours, as my CF and my life are different to yours. What scares me may not scare you and what medical issues I have / had won't be the same as yours. I stress this to you as I don't want you to think your journey through the transplant system will be identical to mine. It may be better, it may be worse, but it won't be identical. I also want to stress to you that I have been alive now for about a year longer than I would have been if it were not for the transplant. That in my book is just amazing. I can not tell you how good and sweet life can be post-transplant.
I want to break down my transplant journey into six parts: the "talk", the assessment, being on the list, the calls, post transplant, and finally the warts! Each stage is remarkably different and has its own stresses, rewards, and idiosyncrasies. Finally, I want to comment about the hospital that I had my operation in, and the transplant team there.
Before I get into my story, there are a few terms I use, which may or may not be familiar to you. tx means transplant / transplantation etc. pwcf means people / a person with CF. abx means antibiotics. Assessment is generally used to mean transplant assessment, which is the process of having tests and consultations to see if you need a transplant and if you are suitable for one. As I was never regimented in doing physiotherapy, the word Physio generally refers to a person doing a job and not an activity! The List refers to the active list for transplantation, but there is an active list and an inactive list.
In addition to this, any facts and figures that I use are not researched at all. My sources are people I trust, but they may not be 100% accurate. Also, other people's attitudes I discuss are as I experienced them to be. You may find someone with an alternative attitude, but I believe what I say to be the case. I don't intend to mislead anyone and other people's experiences and interactions may always be difference of course.
The "Transplant Talk"
Its ward-round day, sometime in 2005, and I'm in room 11. Not expecting anything special this ward round; they won't be letting me go home this week I can't imagine. I've been here for four weeks now, which is personal-worst for me, but I still rate myself as one of the more "well" pwcf that I know, I'm just going through a bad patch.
The Doc comes in with her team: Specialist Nurses, Physio, and a couple of others. I get asked the usual questions of "how are you?", "feeling any better?" and "how much physio have you been doing?" I answer truthfully to the first two! The next bit floors me. I don't see it coming, and it was so unexpected to me that I remember it verbatim 5 years later. "Have we ever spoken to you about transplants?" "No, why?" "Well, we need to talk about it now!" she says. After this, she could also have said that I had just won the lottery or that the Matron had been seen water skiing through the ward being towed by a pink dwarf in an England Rugby shirt. I glazed over and didn't take anything else in after those words. I still don't have any idea what else was said after that statement. I now had to face the fact that I was a lot more ill than I thought.
The following months were littered with sleepless nights. Could I go through with it; what if it failed and I lose precious time; could I deal with life after the transplant? All these questions went around and around my head night after night. One reason for this is I realised is that we get referred so early. Once I was on the active list, I had deteriorated to the point where being on the list for me was the only sensible option. My suggestion for this period would be to just go with it and not get too worked up about it. Don't get too worked up about it right now.
The Assessment
What I didn't realise is that it can take ages to go through the assessment process as there are numerous tests and appointments to wait for, so the Doctors need to start the ball rolling long before one actually needs be on the list. When you have "the talk", don't think you need to be on the list immediately or that they think you are going to die any day!
The one thing I would really like to say is that at any point in this process, you can change your mind, and then change it back again if you want to! It is a highly emotional time and the CF Docs and the TX Docs know this very well. No-one will be angry with you if you go for an assessment and decide you don't want to go any further. Similarly, if your immediate reaction is to say NO! to a tx, then they will not be shocked at all if you later say "actually, I would like to talk about it". You won't be the first to do so: you won't be the 101st to do so. So feel free to change your mind. It is your life and it's a scary time, so they are really understanding about this. If you get through the assessment and decide it's not for you right now, tell them that. It allows you a really easy way to come back to them at a later date and say that you are now more ready to deal with it and accept it. Also, if you are on the list and decide that you no longer want to go through with it, that is OK too. Tell the CF Docs or the TX team. I am sure they would want to talk it through with you first, to make sure you are happy with your decision, but I am sure they will be fine about it.
The tests vary from person to person and some people I know had tests that I didn't need. There will be at least one admission to the clinic of your choice, generally for three days, which will include X-rays, blood tests, ultra sounds, and other tests. The tests themselves are nothing to be concerned about and most take only a few minutes. Except for the walking test! This is a sedate version of the shuttle test which your favourite Physio may have forced you to do against your will and against the Human Rights Act. It involves walking as far as you can in a set number of minutes. If you need to go back for another assessment, the tx team can compare your walk tests. That's about as tough as the assessment gets. There is a lot of waiting around though, which isn't fun.
At the end of the assessment, you will see the consultant, who will have a very good idea of whether you are suitable both physically and emotionally for the list. At this point, you need to have an equally good idea in your head as to whether being on the list is what you want. Remember, you can always change your mind as this is ostensibly ‘elective surgery'! That said, for your own emotional well-being, try and decide if this is for you before you get to this point. Also bear in mind that it is highly unlikely that you will receive a call the next day (although it has been known!), so don't think that they expect you to die imminently because you are on the list. My consultant expressed this state by saying that my chances of being "here" in 12 months time with a tx are better than my chances if I don't have one. Nothing can be guaranteed though, so the length of time you will be on the list can't be determined and whether a suitable donor will be found for you in time can't be determined either. In addition, your condition will deteriorate at a rate that can't be predicted. I know one guy who had an assessment over 10 years ago and still doesn't need to be on the active list.
One of the things that the tx centre will stress to you at the assessment is drug compliance after the operation. This sounds a bit patronising, but the number one cause of a transplant failure is the recipient not taking their meds. I was so concerned about whether I could comply or not, that I actually thought about not going on the active list as it would not be fair on the donor if I rejected because I was slack on my drug compliance. In all honesty, this caused me many sleepless nights. Then one day I realised that many people, like my Auntie, find themselves meeting the transplant team and not just pwcf! A person who has had a heart-attack, or been diagnosed with COPD might find themselves instantly referred to the tx team having never taken any medication in their life. PWCF are used to taking many drugs and doing their own IVs, taking nebs, and popping dozens of tablets in a day. After your transplant, it is pills 3 to 5 times a day and maybe a neb once or twice a day. I realised that post-tx compliance is a walk in the park compared to CF treatment! All of a sudden compliance didn't seem quite so scary as it's not as tough as we are already doing. That said, with CF meds, if you don't take them you become ill, with anti-rejection drugs, if you don't take them, you will reject your lungs and this can be irreversible.
Being on the List
You will probably experience the same thing that I did on many occasions. Many, in fact most people, don't know anything about transplants. So many people asked me if I had a date for my transplant. This seemed to be the strangest question to me at first, but I guess there is still so much ignorance of transplants in the community. There is confusion between a waiting list for an operation and being on the active list for a transplant.
Being on the list can be more stressful than you may have imagined. The tx team suggest that you are always close to the centre, and ideally, within two hours of the centre. This is in case they get a call to say there is a donor available, they accept the organ, and they ring you. If you are on holiday in Torquay, then they can't offer you the organ. The theory is that when you leave the comfort-zone of being within a few hours of the centre, you ring the tx team to tell them, and you are put on the inactive list for the duration of your holiday. Some people on the active list fear that they will miss out on a call because they are away to such an extent that they never leave the two-hour zone. I know of one person who went one step further and was never more than an hour away from their centre. This person never received a transplant and arguably lost out on many things they could have done with their remaining days. It is up to you how you deal with this however; I took the viewpoint that I was going to live the life I had while I could.
The active list is nothing like a waiting list and people move up and down it and on and off it regularly. Staying on the active list is a balancing act. If you pick up an infection, you may be taken off the active list until you recover. If you have your steroids increased beyond 15mg you may be put on the inactive list until they have reduced again. I personally found this very stressful, but by and large, it was out of my control and all I could do is resist the increase in my steroid levels until it was absolutely necessary. My Docs, and hopefully your Docs too, understand these issues and never took decisions lightly if they resulted in my becoming inactive. On-call Doctors in the hospital are not so savvy, so be sure to tell them if they decide to up your steroids or even insist they consult your usual Docs before they up your steroids.
One of the things that people said to me very often is a variation on the following "Don't you feel bad hoping someone dies so you can live?" I like to squash this sort of misconception instantly. My reply is that the person is going to die and I can't do anything about that at all as I don't know them and never will. I only hope that they carry a Donor Card, or their family are strong enough to think about organ donation at what must be the worst possible time for them. My heart goes out to all families in this situation, but as people in need of an organ, we have to accept that people die every day even if we don't want them to. We should not have any guilt about anything we don't have any control over.
Please remember, don't stop living the life you have once you are on the list.
The "calls"
The concept of carrying a pager with you at all times is largely gone now thanks to the mobile phone. Just make sure you give your tx team your new number should you change phones, and make sure its always charged!
I had a lovely friend who gave me a great deal of help with waiting for the call and what to do when it came. I call them as ‘false alarms', but she called them rehearsals. Rehearsal is a much better term. When you get the first call, treat it as a dry run. Be calm and just get to the centre as fast as you can but safely. It would be horribly ironic if you were in an accident on the way and couldn't get there in time as you were waiting for the RAC! With both of my calls, I had hours of waiting once I actually got there. The brakes on my car needed the time to recover, as even with the advice I had, I still lost the plot slightly. The waiting is generally down to the fact that you may get to the hospital before the lungs do. The donor may be in a completely different county or region. Once the lungs do arrive, the surgeon has to examine them to see if they are suitable for transplanting. I am told that only 1 in 10 organs are suitable for transplanting. This does make a lot of sense as what ever killed their original owner could have damaged their organs too.
When you get to the centre, there are the usual tests of a sputum culture, blood cultures, an X-ray, and possibly a few others. Then there is the mandatory shave. I am ashamed to say that I wondered why having a smooth face was important and was a little shocked when they pointed to the bits that they wanted to me to shave! It turns out that they weren't at all bothered about a smooth face, but the parts of the body that they were going to put venflons and lines into as well as the chest have to be clean and hair free. After this, you have to wait for the organ to arrive, if it hasn't already, and once it has arrived, the surgeon has to examine it and make sure it is suitable for you. Giving you a dodgy organ is not a good idea even if it is upsetting to you. The surgeons have a duty to give you the best chance that they can, even if that means 7 false alarms a week. One of the lungs that were donated on my first call was damaged. The other went off to a patient that needed just the one lung. I am genuinely happy for that person.
You need to discuss with your centre how you get to the hospital when you get a call. Some centres will send an ambulance and some require you to make your own way. It does depend largely on your circumstances and whether you are at home or in hospital when you are called. Other factors such as how far you live from the centre and whether you can drive will also have a bearing. Don't be afraid to tell them exactly what you want to do. You have to feel comfortable with the system or it may breakdown on the night. If you are not a confident driver, can't drive, or you can't drive at night (most calls come at night) then tell them.
After you get the go ahead, you may have half an hour or more to wait before they take you to theatre. Make the most of this time if you can!
Post Transplant
The first two things that I thought when I woke up after the tx was "wow it worked!" and "OMFG IT HURTS!" The pain is controlled by a morphine infusion which you can control yourself. When you feel the pain, click a button that they give to you and you get a shot of morphine. My suggestion is clicking it every three seconds if not more. I don't want you to read this and become nervous of the pain and decline an assessment. It's an operation and it's going to hurt; that's a given. The pain is managed by drugs and it's up to you to tell them how bad it is. The pain subsides and each week is better than the week before. Every Monday I went to the clinic and thought about how I felt last week compared to how I felt that day. Every week it was better. It does take time, I won't lie, but it goes. It is very cliché, but for this gain, there is pain.
Physios are not the softest people on the earth, and the post-transplant Physios are no different! The next day, they had me out of the bed and sitting in a chair. The chair was only 3 feet away from the bed, but I counted this as extreme and strenuous exercise! Within a week, I was walking around the ITU suite, which was probably the furthest I had walked in months. I couldn't believe the transformation. Within two weeks, I was walking around the ward and was put through the staircase test before I could go home. I passed it by going up a flight of stairs and back down. I hadn't done that in one go for over a year, and this was within two weeks of the transplant. After that test, I could go home, exactly two weeks to the day of the operation. That was the shortest admission I had had for a very long time.
Don't expect miracles too soon after your tx. It does depend upon how ill you were before your call. Before my op, I could hardly walk from my bed to the en-suite loo of a room on Ward 26, so it was slow going for me, but each week I could do more than the week before. Each month was a great improvement on the month before and at the one year mark, I just couldn't believe the difference to the previous year. It was not something I could get my head around at all. No-one could have told me the night of my tx just how good I would feel in 12 months' time. I can't run a marathon, but that is no change from when I was young. I can't sing or whistle, but same again. I did enter the Dads' race at the school sports day, and came last (with a 90 metre head start) but I couldn't have even walked to the start the previous year.
My main goal for after my transplant was to be able to carry my daughters to bed. I can do that. I wanted to pick them up and give them a cuddle when they hurt themselves or feel unwell. I can do that. About 5 months after my tx, my youngest daughter was stood on a chair and I felt strong enough to grab her and pick her up. She said "all my dreams have come true". I cried. All of a sudden the pain had vanished from my memory and all the hard work was rewarded hearing those 6 words. The stress of the assessment and being on the list; the slow journey back to strength; all realised in that one moment. For everything else, there's a credit card; this, was priceless.
I now get up early with them every day. Prior to my op, I used to stress the Physios out by still being asleep at 1:30pm. I can now walk to the park with my girls and kick a football. Still doesn't go where I want it to go, but I can kick it without collapsing afterwards. At my annual review recently, I had my best ever lung function in over a decade that I have been with the Heartlands clinic. I couldn't have imagined over a year ago that I could have anything like this level of good-health. Even now, I can't get my head around what an amazing transformation it is between how I feel now compared to before my tx!
Like all drugs, the post-tx drugs have side-effects. These vary from person to person, and one of mine was ultra-sensitive teeth! There are other side-effects and they can swap your meds if they are causing you problems.
Warts n All
The transplant doesn't solve everything. If you have stress in your life before, it will still be there after. In my experience, you will be better able to cope with the stress, but people do seem to expect the transplant to solve everything. I had not expected to live much longer and had therefore let much of my life go, friends, career, hobbies, etc. When I suddenly had to live again, that brought a few complications. Being alive with complications is certainly better than being a carefree dead person! When you are on the list, be sure to talk to a Psychologist and discuss both outcomes of being on the list. I was convinced I wasn't going to be lucky, and hadn't given much thought at all to what I would do after a transplant. This was a big mistake, for me.
This may sound very strange, but I suffered very badly with Depression in the months following my transplant. I have no idea why, and what caused it, but I am told I am not the only one to suffer with this. I suggest it is just as important to see a Psychologist after your transplant as it is to see one before.
Rejection! As far as I understand it, rejection happens to everyone, sooner or later and rejection is the usual cause of the new organs failing. Rejection can happen in days in some cases, three weeks in my case, or 15 years for some. My team told me that there is a one in five (or 20%) chance of my lungs lasting longer than 5 years. That might not sound fantastic at first, but as I might have had 5 weeks left before my transplant, anything up to 5 years will be more than amazing! If it all ends tomorrow for me, I will have had the best year that I can remember for so long, I don't regret for a second having my operation.
Fragility can be a problem and has been for me. We can't be as relaxed about our medical issues post-tx as we could before. With CF you can leave it a week if you feel unwell because you have a party to go to, or there isn't a bed available. With the tx issues, you can't be relaxed at all. I had a lot of pain after my tx and reported it at clinic hoping for better pain killers. I debated this with the consultant, who is open to my viewpoint, but he decided admission was the best option. He was right as I was rejecting my new lungs. Had he listened to me, I would have taken much longer to recover as there would have been more damage. Another time I turned up for clinic feeling rough and asked for some oral abx, but again he insisted I was admitted. Again he was right as three hours later I was in ITU again with a bad blood infection. When I had an infection with CF, I would probably have gone home to bed, to see if I felt better. Had I done this, I would probably have never woken again. I don't want you to read this and be scared by it, but if you do get a tx, it is very important not to take the signs lightly. We are so used to feeling rough through CF that it is easy to keep that old mind-set, which could be very costly indeed. You owe it to yourself and to your donor to take any problems very seriously.
As I mentioned already, you are not hoping someone dies so you can live. People may say this to you, but you are only hoping that someone who is already going to die carries a Donor Card. You can never say thank you to them or know anything about them at all, but you can send a thank you later to their family via your Transplant Co-ordinator. My clinic doesn't allow any personal interaction between the recipient and the donor's family. They also don't allow any personal information to be passed between the two, only a general thank you and some sort of expression about how bad things were and how good things are now. Don't think you will be able to do this on the first day you get home. You may do, but it took me a year to finish my letter. Every time I sat down to write it, I got a wave of emotion and couldn't write more than "Dear ". I got to "thank you" many times, but it just didn't seem to have anything close to the sentiment that I wanted to convey. It took many attempts, and about a year to do, but I finally got my letter finished. Some people send and receive Christmas cards to and from their donor families, which helps them both deal with what is possibly the biggest traumatic event for both parties.
Queen Elizabeth Hospital
There are two aspects to this as the hospital is different to the transplant team based there. The hospital and the ward of East2B in particular have put off many people that I know. It is old and run down. This is partially because there is a new hospital being built about a 2 minute walk away. I can't imagine that the trust will want to do much to this ailing ward while they are spending millions on the new hospital. The clinic is due to move to the new hospital mid to late 2010. If you are reading this after then, then you can ignore this part and move on the transplant team. I want to stress that the ITU in the QE hospital is amazing. It is very clean and the team is brilliant. The resources are good and I never once felt in any danger there at all, even through some bad times for me. It was leaving ITU and heading to the ward that scared me. Once that ward has moved to the new hospital, the bays will be single, double, or 4 bed at the most. We are definitely spoilt at Heartlands having our own en-suite single rooms. In East2B, there are two showers for 40 people. On ward 26, there are 20 showers for 20 people, which is 20 times more! I will be the first to say that East2B is not in the same league as Ward 26, but I do want to stress that its days are numbered and that number is a small one. Also, appreciate just how good we have it on Ward 26!
The TX team on the other hand are great. They have very few faults. If there is the slightest concern over your health, they take it very seriously. They have invested a lot in a tx patient and they don't want you to lose the opportunity you have been given by being cavalier with you when you report a decline in health. There is always someone on call: always. They monitor you very closely to make sure you are on the right level of drugs and check for any negative side-effects of those drugs and where necessary, change your anti-rejection drugs.
Its not quite as relaxed a relationship with them as it is with the team on Ward 26, but they are learning the ways of the pwcf! They're becoming used to us calling them by their first names now, and being highly knowledgeable on our condition. They thought it was unbelievable that I could do my own IVs, but they now accept it and with more pwcf coming through them, they will become more familiar with our idiosyncrasies. This is a good thing!
If you have veins which are now difficult to access and you have a port, I would strongly recommend speaking to the CF team about keeping your port in after the tx. They like to take them out as a port is a possible source of infection. Mine was left in and I am very glad it was as I have had quite a few IV abx courses since and that would have been a nightmare for me without my port. The nurses on the ward at the QE are not used to ports at all as most of their patients are cardiac and therefore only use venflons. I keep a supply of grippers and Heprin and they are not routinely stocked in the QE.
It's worth noting that not all clinics are equal. Some specialise in different things, and some are prepared to try a patient where another may not. I have no idea why this may be, but I met a guy that had been rejected by one tx-clinic, only for another to accept him and he is now on the active list. Remember, it's your life, and you have a right to get a second opinion and fight for what you want.
In Summary
To sum this up, my journey has been eventful and has had much stress, but I highly recommend a transplant and I also highly recommend the team at the QE in Birmingham. For me, it has gone well, for many of my friends it hasn't, but you won't know unless you try. I wish you the best of luck and you are more than welcome to email me with questions or your own story. My email is mr.grimlock@yahoo.co.uk and I will generally reply with a day or two.
Finally,
Good luck!
