Small Steps

It's been a little while since my last blog and that's just because I've had a blip with my health again. I literally just picked up a cold to start with, but having very little immune system due to my transplant, unfortunately I wasn't able to fight it off. My transplanted lungs were already left quite fragile from the acute rejection episodes I'd experienced before Christmas, so infection took a hold in my lungs and I ended up being blue lighted to my local hospital.

Our NHS is constantly being criticised, but I have nothing but praise for the care I was given - I had the NHS at its best. I had an emergency home visit from the GP within less than an hour of phoning and was immediately ambulanced to the Lister Hospital in Stevenage. The GP, paramedics and the staff at the Lister couldn't do too much and it helped make me feel safe and secure. I was in quite a state physically, and mentally a bit more than worried about what was going on with my lungs. I already had a bronchoscopy and biopsy with my transplant team booked for the following week because my lung function had been dropping again and had never recovered back to where it had been since the rejections.

By late afternoon I'd been transferred to Papworth and was diagnosed with a severe chest infection and started on IV antibiotic treatment. Further investigations showed I'd picked up a strain of influenza too, so I was moved into isolation and given extra treatment for that. I think it's demonstrated to me just how serious infection can be with transplanted lungs and being immunosuppressed or if you are vulnerable due to other health issues or your age. I've always known it and have gone out of my way to try and avoid infection, but there is nothing like actually experiencing it to bring it home what a life threatening experience just catching a simple infection can become. 

A few weeks in hospital and now home again, it's taking small steps and time to recover. I hadn't been able to do much for myself because of my poor breathing and lack of strength and Rob automatically went into 'carer' mode yet again. It's been difficult to measure progress on a daily basis as it's slow, but over a week we can see signs of improvement that are encouraging. I've actually managed to start eating more, which will help build me up a bit I hope. My Sats have improved, although my breathing is still a struggle. I think this is very encouraging and hopefully I will feel the difference soon. It seems to take me forever but I've been able to wash, dress and bathe independently in the last few days, which again, feels like a huge step forward. 

My consultant did say this will take a few months to recover from, so it really is small steps, but I've done this before, probably many times now over this last seven years, so I am confident that if I keep on pushing myself, I will keep on progressing forwards. Hopefully things will be onwards and upwards from here. 

I'm looking forward to a quiet and relaxing Easter weekend with my family and just want to say a massive thanks for all the messages of support, love and good wishes you have sent us. It really does make a difference when things feel like they're a struggle. Wishing you all a very happy and peaceful Easter weekend. Enjoy. 

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!