Time for the May Clinic Visit

There is nothing like a visit to clinic to bring you back to reality. I'd been given a whole eight weeks off, which was fantastic, but it had flown and come round again really quickly. It is a catch twenty two really, it's great to be away from doctors, tests and hospitals and be leading more of a normal life, yet it is a huge relief in some ways to be back at clinic to get checked out and be told by doctors that all is looking fine and going well. 

So I had all the usual tests: bloods, x- ray, ECG and lung function and then saw the transplant nurse, followed by the doctor. Once again, thank goodness all is looking good and I was told that whatever I'm doing to keep it up, as it is working well. After the blip with my lung function recently, it is now higher than it's ever been, so we were all delighted with that. 

They were going to let me go a whole three months until my next clinic, which is pretty good going seeing as I'm only seven months post transplant, but there is still the ongoing issue of the chronic cough I have developed since my operation. They are concerned it may be due to stomach acid - this is a very common problem after a lung transplant and can be very damaging to transplanted lungs-  therefore I've been booked in to have tests on my stomach over a couple days in June. I then need to go back in July for my results. That is still a month though before I'm back at hospital and two months before I'm back at clinic, so that is great.

The only thing that may change this is that I'm still waiting for news about my other surgery from the Lister Hospital and the transplant doctors have advised that if it cannot be done there, then they can arrange for it to be done at Addenbrookes, who work more closely with the Transplant Team. I don't think it will be too long now before I know properly what needs to be done next and where and what I have to deal with. 

I am just pleased that so far everything is still going well and I'm positive that these next two hurdles of more surgery and tests for my stomach, will all just get sorted out and be part of the process of getting me even more better and back to normal. 

We managed to escape clinic fairly early and as it was nearly lunchtime, we went off to a nearby village pub for some lunch. We like to try and turn a hospital day into a more positive day if we can and feeling pleased with the outcome of my visit, we went on to St Ives, which is only a few miles from Papworth, but is a very picturesque, historic town. 

We had a browse around the shops and then had a lovely walk through the meadow by the river, it was a gorgeous sunny day, rounded off with an afternoon tea at a river side cafe.  We have visited St Ives once before my transplant and I couldn't really manage very much or walk very far. 

Life's feeling pretty good now - what with the glorious sunshine, coupled with a good clinic visit and the incredible difference in what I can now physically manage - it doesn't really get much better! 

Clinics, Bronchoscopies, Biopsies and All!

An early start, then the heavens opened!

It's just been the first full week of January and all the festivities are all over and behind us once more. This week is a bit of a wake up call after all the enjoyment of the last few weeks, where I've put aside all those niggling health worries and had no hospital visits to think about. Suddenly my next clinic visit was imminent, together with a stay in hospital for yet another bronchoscopie - I think this will be my eighth or ninth, I'm losing count now - and a lung biopsy to check if there are any signs of rejection in my new organs.

Suddenly as we get nearer to clinic day it all starts to feel very frightening and overwhelming. I think the fear is heightened as it's been Christmas time and we have had such a lovely time and been busy doing special things and seeing family and friends and I've managed to put aside a lot of my worries about my transplant.  It's not that I'm pessimistic or anything, I try hard to be optimistic, but I'm also down to earth and practical and like to be mentally prepared for any eventuality. The morning is dark and the weather reflects my despondent mood, blowing a gale and absolute torrential rain - roads are covered in flood water as we navigate along them. 

As clinic day drew nearer, I had started to get lots of pain underneath my lower ribs, which seemed to shoot upwards at times and downwards at others. It felt like my drain wounds underneath my chest were sore again, but not quite the same. I kept thinking is it my new lungs or is it underneath them? The pain got worse the day before clinic and I felt relieved I would be having a thorough check, but scared to death about what the pain might be. 

I've been walking over a mile during the Xmas period!

Rejection is a very frightening word in my world of transplant. I have to measure my weight, my lung function and my temperature every day to check for any changes, as this can be a sign of rejection - all seemed fine though on that front and I have to trust what I have been told. It is instilled in you to watch out for any signs of things being or feeling different in case of rejection, so it can be caught early and treated and slowed down or stopped. How on earth do you know what it feels like though or if you feel anything at all when it starts happening? 

You can't help wondering and worrying at every small ache and pain sometimes; you want to phone the Transplant Nurse and check, but if you do, you feel you would be phoning up every day with something or even three or four times on some days! So you have to strike a balance, but bottom line is: if you are really worried, you phone! Knowing I was going to clinic the following day and actually had a biopsy and bronchoscopy planned too, I decided to wait rather than phone up. If I hadn't had clinic and tests planned, I definitely would have been phoning up, as the pains were getting worse. 

So why are we transplantees so scared about rejection and our aches and pains? Well obviously rejection of a main organ can be fatal and in my own case I've got three organs that may reject to fret about.  There are a few types of rejection: acute, chronic and antibody mediated rejection. 

Knebworth recreation ground where you will often find me practising my walking!

Acute rejection is when the body starts to reject the new organs very quickly - it is very common in the first year of transplant and there is always an ongoing risk - but picked up early it can be treated. It is therefore imperative that you watch out for the signs and it is treated soon enough. The trouble is in those first few months of recovery, you experience all sorts of ongoing aches and pains due to the whole process of the operation and healing, let alone the fact that you have transplanted organs inside you that are settling in. These aches and pains seem to change by the day and you end up not knowing what is normal or not normal. How would you know? 

Chronic rejection happens over a period of several months to many years. As lungs are very delicate organs, this can start as early as six months after the operation. In lungs it is called 'obliterative bronchiolitus' and is where the lungs get blocked by scar tissue and then do not function as well and then the lungs begin to deteriorate over time. Infection is linked to this one: recurrent infection can cause permanent damage to transplanted lungs, that is why it is so important to try and avoid infections. It can make the difference of a long prognosis after transplant or a short prognosis. So if I am a little paronoid about infection and my new lungs, it's purely because I want to live for a very, very long time to come! 

There is also antibody mediated rejection, where your body produces antibodies to your transplanted organs. Antibodies are proteins made by your body to fight infection and foreign substances. That is why we transplantees are heavily immune suppressed, if this type of rejection occurs then there is a process called 'Immunoadsorption' where anitibodies are removed from the blood that may help.

So on Tuesday, after a bad night's sleep, off we went to clinic and in contrast to all the festive fun, I'd come back to earth with a big bump and still felt worried about the pains I was having; worried whether they would find some rejection; worried about infection; worried once again about the couple of problems I have in my trachea with the scarring and healing, which they were going to check on again and if they might say I need surgery. Basically I wanted to go into denial that I'd ever had a transplant and just stay in my Christmas cocoon and not have to go to hospital to be prodded and poked ever again! But reality has to be, I just don't want reminding of it sometimes! 

Once I got to clinic, all felt a lot better. I think on the way there it felt a bit like that first day back at work after Christmas, when you have to get back to real life, but multiply that by about a thousand to be nearer the mark, because of the unusual situation we are in and the anxiety of what may be found once there. Back in clinic, you are amongst a whole roomful of other families, who are also in this same bizarre situation and then it all becomes normal again. There are others, who have dressings on their necks, scars peeping from the top of their chests, plasters on their arms, canulas popping out from their sleeves and I'm back in the place where everyone totally understands. There are familiar and friendly faces amongst both the patients and staff and a feeling of calm, routine and order, we are back in what I call my parrallel world and it suddenly feels as though I'm back on safe ground and back in familiar territory again.

The clinic is a long, tiring morning with blood tests, x rays, ecg, lung function tests, a chat with the nurse, a chat with the consultant about the test results. The tests looked good so far, no nasty shadows showing on the x rays. The awful pain turns out to be good news - it is the nerves that have been damaged during the surgery growing back and working again - I am so relieved I can't believe it. I'm told it will all settle down in time  - thank goodness! 

Next up it's canula time, my least favourite bit, always a struggle, but this time it only takes three attempts and two nice bruises! Then it's up to Baron ward and I find out I'm sharing a room with my lovely friend Bernice! She has hatched a little plan with the nurses! We get a chance to catch up before bronchoscopie and biopsy time. It is so good to see her.

Bronchoscopies are becoming a normal procedure for me, but I still feel a bit nervous about them. It's the same welcoming team and Dr Parmar, my consultant is going to undertake it. We chat about Christmas and he stands with his hands behind his back while he chats. I know what's coming - he's hiding that awful stuff behind his back that he squirts down your throat and then it makes it numb! Next I'm waking up and it's all done with. The results are good, the areas of my windpipe that they were checking are looking better than before and looking like they are healing well. They still want to keep a close eye on things, so they will do another check in a few weeks time.

Later the following day I get the good news that there is no rejection and the better news still that they are going to start reducing my medication. The best part of the reduction in medication is that it is all the inconvenient stuff that impacts on your quality of life that is going. The Amphotericin that is taken by nebuliser three times a day, which can tie your day up and the water tablet, Furesomide, which is just a big inconvenience every single day and has been for years. Hooray to the end of that! My steroid, Predisolone was also reduced. 

I was discharged one very happy patient after all that worrying and with a new and uplifted feeling that a new chapter starts in my life tommorrow with the reduction in my medication - nebuliser and water tablet free at last! It is sun shining as we drive home, opposite to when we drove there, the weather reflecting once again my mood, this time I'm elated and happy! Thursday and I'm up to my old tricks again - I just cannot stop smiling and pinching myself and know just how lucky I am, yet again. I think of my donor and their family and what they have made possible for me!

My First Visit to the Post Transplant Clinic and Week 5

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!