I thought a post about this may be interesting, especially for those who are waiting for their transplants and just like me won't really have a clue what to expect.
Once discharged from hospital, having a transplant is not like any routine operation, there are continuing risks of getting infections because of the immosuppressants that are needed to be taken to stop your body rejecting your new organs; the level of immunosuppressants also needs to be monitored to ensure rejection is under control and tests need to be routinely undertaken to check for rejection. It is not always obvious that rejection or infection may be happening, so us patients have to monitor our own weight, temperature and lung function every day as well as being monitored by the hospital. Having a transplant requires a lifetime commitment to medication and ongoing care. There is a swap of one set of medical problems for another, but hopefully with it comes the chance for a much better quality of life than you may have been having before and a better prognosis and that is why many patients dare to take the transplant option. For many people it is a life changing experience.
When I arrived at my first clinic, it felt a bit busier and more bustling than the pre transplant clinic. Everyone seemed to know exactly what was what and I felt a bit like the newbie who didn't have clue what was going on. Rob said it felt like taking me to big school! There seemed to be a queue for the blood tests, staff were calling if there was anyone for an ECG or if there was anyone for lung function tests. To be honest I didn't have a clue what I was waiting for, so waited for someone to call me. The nurse called us pretty quick and explained all that goes on. Basically as a heart and lung transplant patient I need to have an ECG, lung function tests, x ray and blood tests each time I come. Everyone arrives at a similar time and you just have whatever test you need as you wait, so if someone calls 'anyone need a lung function test' and you do, you just go and get it. If there is a queue for blood tests, then you might pop and get your x ray or ECG while you wait. Pretty quickly I had all my tests done and then you have to wait a litte while to see the consultant to discuss results and any problems or queries.
The blood results come in the following day, if all is ok then you don't hear anything, if any medication needs adjusting, such as the Prograf (tacrolimus), the transplant nurse phones and tells you what adjustments need to be made. So all pretty much simple and straight forward stuff, similar to the pre transplant clinic, but you organise yourself and take responsibility a bit more.
It takes the whole morning more or less, my visit took a little longer as I needed a few extra things doing, such as having some stitches removed and needing some extra medication from the pharmacy. I also had a bronchoscopy booked for the afternoon, which is not usually routine for week four of your transplant, so they needed to put a cannula in for me too.
So finished and done at the clinic, everything looking fine, it was off down to the Thoracic Day Ward for me, a place I know well from my Pulmonary Hypertension days. I like this small homely hospital for that, it makes you feel at ease knowing where you are going to be next and having had three bronchoscopies already by then I felt at ease what to expect for that. I was just bushwacked after an early start and long morning and it still being early days after my operation. Having a bronchoscopy means 'nil by mouth' from breakfast, so I felt starving too. I knew I must be getting better, because a week ago when I'd had this done and been 'nil by mouth' I didn't even feel hungry!
A bronchoscopy is nothing to worry about either, I was scared when I went down for my first one as I didn't know what to expect and I don't really like the thought of people shoving things in my mouth and down my throat. They talk you through everything and everyone is kind and caring. It's always been the same staff helping too, along with the doctors and consultants who by this stage you are getting to know well and feel very confident with. They spray your throat a little to numb it, which isn't so bad and tastes a bit like banana and then they give you an injection, this just sends me off to sleep and I know nothing of what goes on. It may be a different experience for others. I usually wake for a bit when it's done and then sleep again for an hour! So seeing as I seem to be having a lot of these at the moment, I don't worry about them at all anymore.
Although it would be good not to have to keep having these done, there is also something very comforting about the fact that the consultants are keeping a very close eye on everything, helping me to clear my new lungs while they are healing (that has been a major struggle for me at the moment and is a persistent big problem, which is ongoing) and they have also been checking that everything else is healing as it should be. I have not minded having to have a few extra bronchoscopies whatsoever to help me with this. They have explained very clearly to me why I have this problem, which is helpful for me to understand and helps me to see that things will improve. It is all to do with the wounds inside me healing up and swelling from the operation itself. Also, as a heart and lung transplant recipient I only have part of my own windpipe and the other part is from my donor, this means that nerves have been severed, these nerves normally send messages to help you cough. So I cannot cough as well as normal at the moment, but should learn how to manage this over time. As the wounds heal and the swelling recedes things are expected to improve for me over the coming weeks, which I hope will then be another huge step forward.
After a day back in hospital like that, I found myself really tired for a few days, so just followed what my body was saying and rested plenty. I was also really pleased, happy and reassured that everything is still going well. When you first go home, the hardest thing is probably feeling a little vulnerable after you've been surrounded by doctors and nurses all the time, who just step in if things feel wrong.
Suddenly you are then at home without this support close to you and you can feel a little bit edgy and nervous. I think coming home so soon added to this, although at the same time it was absolutely fantastic to know I was doing so well that I could come home less than three weeks after my operation. I think it is a matter of finding your feet and building up your confidence that you can cope and this begins to feel a bit easier as you begin to feel a bit better too. It is good to go back each week and get some reassurance though. It does help with your confidence to get on with your new life and you know the team are always available on the phone to help too and I have had to ring them a few times and they have been really helpful and reassuring, however silly or small the problem.
This week I've also had a very successful visit to my GP, thanks to a very lovely and understanding receptionist at my doctor's surgery. My previous GP, who knew all my medical history has left the practice and it was a case of making some proper contact again with a new GP, who would be able to fully understand my new complex needs and medication. When I went to see my new doctor, he had already spoken to the team at Papworth and we managed to organise who would be prescribing me what when I need new medication. Some of the medication is very expensive, so Papworth will prescribe me some and the GP is going to prescribe all the more routine stuff. Another big thing sorted out and step forward.
I also had a visit from a local Hertfordshire Community Cardiac Nurse, this got triggered from a request from Papworth's physio for Cardiac Rehabilitation. She spent a lot of time with me and gave me some helpful tips and it is nice to know I can contact her if I need anything and that there is some support locally. I'm waiting now for an assessment for cardiac rehabilitation or pulmonary rehabilitation, the physio will assess and decide which is better. Somehow I'm feeling a bit of an odd case, because I probably fit both in some ways with my brand new heart and my brand new lungs!
So a very productive few days since my last blog! At this week's clinic, I will know what's what, I won't feel such a newbie anymore, I should feel a little better and improved even and better still, I should be done by lunch if there are no problems, so far there is no bronchoscopy planned, so all should be less tiring.
Onwards and upwards still!
